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Things Are Bad


Dizzy Dame
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Hi Guys,

I've been waiting to post because I was hoping things would just work out on their own, but it's gotten so bad and I'm completely out of ideas.

Two weeks ago I developed "reactive hypoglycemia" and had to go off the antibiotics that are treating my lyme disease. My body was/is just too weak to handle and the bacteria that are dying off, and my adrenal glands became affected. We're going to re-start in a few weeks, but my doctors have told me that this could possibly happen again...

Since then, I've been pretty much bed bound and my boyfriend has had to take several weeks off of work to take care of me. Unfortunately, the strain of all of this has ended our relationship. He's getting ready to move out after three years of being together.

While I'm very upset about the relationship ending, I'm also worried because I need a caretaker all the time now, and my insurance doesn't pay for what they consider "custodial care". I don't have any family members who would be willing/able to help out, so I'm kind of stuck in a really bad situation.

Do any of you know of services (be they government or private) that could help me? Right now I need care pretty much 12 hours a day, and I can't afford that kind of treatment. Any information you could pass on would be so helpful!

Thanks,

Lauren

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Are you invovled with a church?

I wish I had some suggestions. Some others should know of these kinds of services. But it does sound like you need a family member or good friend around--even if you can get other care as well.

I have had bouts of reactive hypoglycemia. It got bad whenever POTS got bad. One thing that helped was increasing salts and fat in my diet. Can you talk to a doctor about how to manage this?

I am so sorry you are going through all of this right now.

Katherine

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Lauren,

I'm so sorry this i happening to you, I'm afraid i don't have any suggestions, the system is a bit different over here. We have social services who come and assess you to determine what help you need.

I'm really sorry to hear your relationship has ended as well, i know how hard that is as well as dealing with ill health.

I too have slight reactive hypoglyceamia (sorry my spelling isn't going good today, brain fog!) and i found that eating more salt really helped me, if i have loads of sugar when i'm feeling rough i just carry on shaking, get headaches and feel really nauseous - also have palpitations at that time.

I don't really have any sugar now apart from sugars that are in fruit and i eat loads of salt, and i haven't had a "shakes" attack in weeks. I say shakes because that's how it starts for me i start with my hands shaking and then my insides feel like they are shaking and then i go white and feel like i'm going to pass out, is this similar to what's happening to you?

At the moment, just rest as much as you can and let your body recover.

i'm sorry i couldn't be more helpful.

love and hugs

becks x x x

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Dear Lauren,

I've been wondering how you were doing. I'm so sorry to hear that things have gotten worse with your health. And I'm sorry that you and your boyfriend broke up. That's a double hurt. :)

I wish I could help more, but here are a few meager suggestions.

You can call you local Independent Living Center. They can be a good resource. Here is a link to their web page that has a directory for the US: http://www.ilru.org/html/publications/directory/index.html If you click on your state then a list of Independent Living Centers in your area will come up. Hopefully there will be one close to you that you can call. The ILC can't help out long term, but they can offer some short term help while they help you look for a permanent solution. For example, last fall in Alaska the ILC offered me: a powered wheelchair to borrow indefinitely, a wheelchair cushion to borrow indefinitely, grab bars for the bathroom that I could keep, a hand held shower head that I could keep, financial assistance for prescription drugs, plus they paid for me to have an in-home caregiver 15 hours a week for 5 weeks.

You can also check with your local Medicaid office. All states have a waiver program, but it varies from state to state. So I don't know exactly what your state offers, but it would be worth checking in to. The waiver program offers some in home help (usually not nearly the amount we need, though). The problem in many states, though, is that they want you to have a nursing need (like IVs, wound care, etc.). One might need help/assistance/supervision 12-24 hours a day, but if a nurse isn't specifically needed to do those things, then you might not qualify. But check to see how your state does things. It might be a beneficial program for you. The income and resource limits aren't as low as with the Medicaid waiver as they are with regular Medicaid. So in that way it is easier to qualify.

The Medicaid waiver has a long application process (but it is nothing like SSDI!) and the Independent Living Center is a short term fix. But maybe with both you could get some help.

Maybe you could check with your local public health nurse. She might have some ideas of who can help you. Also, I think the public health nurses do home visits as well for those that are disabled. Maybe you could have one come to your house regularly to see how you're doing, track your symptoms, and record your vitals. Maybe that would even be enough to get you qualified for a Medicaid waiver.

Do you need help preparing food? If so, you can look into the Meals on Wheels program. I'm not sure if they only deliver to seniors, or if they deliver to people with disabilities too. It could be worth checking into. I've thought about checking into it becuase if we ever get out on our own again (we are living with my parents right now) I will need help with meals while my husband is at work.

I'm so sorry that you are going through all of this, Lauren. If there is anything else I can do to help (like help you find web links or phone numbers), please let me know.

Love,

Rachel

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Hi Lauren

I am so sorry that you have to live that kind of situation. I do not know the system, but I hope you can find some help soon.

:) Where is the love when someone can let you alone knowing how bad you are feeling and your needs?

I wish I were close to you to help you.

Rest as much as you can and ask for help to doctors, social workers, associations...

I am sure you will be able to find someone.

Keep up the faith, better times will come,

Love,

Tessa

P.S.: For sure that someone with more knowledge about these things will give you the right information.

Edited by Tessa :

Rachel has been most helpful.

You are never alone, Lauren. ;)

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Sorry sweetie, I have no idea about lyme, and not sure what to suggest, except as per previous posts.

There are volunteer agencies depending on where you live, but that much help usually requires a doctor's order, and insurance to cover it. Even then, it's limited....

I hope you can get something figured out....assisted living for a short time maybe....we are all so wealthy of course....But if you need that much help right now, it may be a short term option...or inpatient rehab...I'm just not sure what to tell you.

I hope you get something figured out! sadforyoumorgan

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I know that here where I live we have a Home Health Service that does things like having a nurse come in as much as they are needed. They can also do home maintainance helping out with laundry, cooking, cleaning and other things. Ours is connected with the hospital, so maybe you can call your local hospital and get some information from them. You might also be able to call your local department of human services and ask them how to go about getting help for you. Another idea would be assisted living if you qualify for that (I am not sure at what level your illness is at, but they can help a lot). Hope some of this helps. And I hope that things get better.

Shelby

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Thanks all of you for your support and suggestions! I've managed to get the number for the human services department for MD, and I'm meeting with my PCP next week to discuss my options. I'm still broken-hearted...and nothing is going to fix that, but at least I'm on my way to (hopefully) getting the help I need.

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I'm very sorry for your situation.

In addition to the other great suggestions I wanted to suggest you look into Hospice Care, if your local hospice has the funding, in addition to end of life care, they may deal with chronic illness support. I believe it depends on the resources they have available, but I wanted to suggest them if the other suggestions don't help. Many people are not aware of the other services Hospice can offer.

I hope you find the support you need to get through this. Also if you have local friends, you may not want to ask for help for fear of being a burden, but many times people are looking for ways to help, they just don't want to overstep boundries or push themselves upon us, and if you ask, they may be delighted.

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Hi Lauren,

I just wanted to add that I'm so sorry that you're going through this all at once. It seems 2007 has brought nothing but bad news for everyone on the forum. I'm glad other people have given you info about organizations that can help. I also echo Patricia's suggestion about asking for help from your friends and family. (I'm always hesitant to do this myself, and my therapist has been pushing me in this area. When I do reach out, I am usually pleasantly surprised.) If noone can stay with you for the whole time, maybe they could come in shifts or something?

-Rita

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Sorry you are going through so much right now. Lots of great advice given already.

My other thought was a possible roommate to offer some assistance in in exchange for rent or reduced rent.

I am not sure if you were covering all your housing expenses or partner was helping. Really not sure what your living situation is-

If you were able to get some assistance through soc. services , volunteers,etc. and have possible roommate to help with additional needs -it may be something to consider.

Take care--- :P

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lauren sorry you are going thru all of this.. Isent you a Pm.. hang int here dear

big hugs

dizz

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Lauren,

Sooooo sorry about the EVERYTHING.

I don't even know where to start. But first, before we deal with the grief of the break-up, we need to make sure you are getting the essentials you need to SURVIVE!

I talked to my mom a long time about what to offer you for resources. Most folks really tapped in to what's out there. Rache recommended Meals on Wheels and other services I would have mentioned. Others mentioned the option of being hospitalized or put in a nursing home (ugh)...but it is an option.

I don't know what your financial situation is. Without your bf there, I would think you would qualify for services? Are you already on assistance or SSDI?

What my mom pointed out is that you need to call the County Assistance office or other service agency and let them know that this is AN EMERGENCY SITUATION. They will deal with the case differently. This IS an emergency and you cannot be waiting months to get care. You need care NOW.

It's hard to imagine getting this all put together when you feel so crappy...ugh.

Basically, your best bet is to look in the part of the phone book that is designated to Human Services and you will find numbers for things like Meals on Wheels, Transportation services for the disabled, County assistance, etc. etc.

Your PCP may need to say that services are MEDICALLY NECESSARY.

What I do know about you is that you are smart and resourceful and with that phone book in front of you, you will be able to do the legwork to get the help you need.

I am sorry too about your bf. It's a lot at such a young age to handle I suppose. My illness ended my longterm relationship. However, all along your bf seemed to be sooo supportive? Did you see this coming?

I just want you to know how much I am thinking abotu you and please keep us posted as to whether you find some help...

Many BIG super-sized hugs,

Emily

P.S. What makes this so hard is that every county and every state are different. My massage therapist has a sister with Lupus who lives in a county with great resources. She is able to get 40 hours of help a week--cooking, cleaning, errands, etc. It's just FINDING the resources that is a challenge.

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Thanks so much Em for all the support and suggestioons. :)

I guess I saw Carl's departure coming down the road. We even discussed him moving back to Hawaii sometime this year...but we'd always agreed that before he did anything, I'd need to be more self-sufficient. But I understand why he's leaving. For the past 1 1/2 years he's been my only support system, which is alot to ask considering we aren't married, and both of us are so young. I don't blame him for wanting out, I just wish it had come at a better time.

My financial situation is kind of tricky, because my parents pay my rent and living expenses, and while they technically have the money to pay for a full-time caretaker, they'd have to curtail their own lifestyle in order to afford it, and they've let me know they're unwilling to make that financial sacrifice. (Living with them is also not an option at this point...so I'm really stuck.)

Because of this, I'm really worried I won't qualify for government services...I'm not sure if I count as a dependent and they'll judge my income based on what my family makes, or if I classify as an independent, and my monthly budget is the only thing counted. It's all very confusing.

All the stress and grief of this past week has made me even sicker too! I honestly wonder sometimes how I can possibly make it through this difficult time.

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Lauren,

The financial thing is tricky...they will count what your parents pay as 'income'. You may need to move into subsidized housing which is rent-controlled if you are on assistance.

You are really caught b/w a rock and a hard place...I know your relationship with them is strained. Interesting that they will pay rent and such but not caretaker, even though you can't live with them...I'm sorry.

More hugs...

Em

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Lauren,

I'm glad you have some suggestions from our little community sent your way. I'm sorry I'm chiming in a bit late , but I wanted to let you know I'm in your corner, and praying that good things come your way.

I also wonder if there is a church that may be able to help somehow, I know other folks who have been helped.

I can only imagine what you must be feeling after losing your only true support system. Fortunately there are other ways to get support, but I realize this has to be a scary time for you.

I wish there was something I can offer other then my support, but it looks like you have some great suggestions--- :)

Sending you a BIG HUG,

Maxine :0)

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Hey Lauren, are there chairities near you that could offer financial assistance for living costs like rent and helpers? A friend of mine got helped by a charity set up just for people in your sort of situation, but this was in the UK.

Maybe google search charities for the disabled in your state and take it from there?

It may be hard, but could you sit your folks down and tell them how hard all this is for you and how much help you really need?

Here any time you need me, hen.

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Thanks again guys for your advice and support! I still don't quite know what's going to happen, but I have some good leads now thanks to all of you! I'll post again when I have a better idea about things...right now I'm just trying to overcome the shock of the situation, but I'll start making phone calls to charities, agencies and the like very soon.

Hugs to all of you!

-Lauren

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