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» LymeNet Flash » Questions and Discussion » General Support » One big mess

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Author Topic: One big mess
LymeNet Contributor
Member # 11274

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Hey everyone,

I feel like crap. I was going to try to say something with more wit or insight instead of that (like feeling flushed down the toilet of life, or running the rapids on a piece of driftwood), but the simpler the better, I think.

Here is my life today, the complete mess:

Unemployed. Do not seem to be employ-able, according to the lack of interest in my resume at the moment.

No health insurance. Honestly, I am several thousand dollars in debt as it is (my former employer bounced some of our payroll checks and has declared a bankruptcy), including back car payments, utilities, and assorted.

Therefore, can't afford COBRA.

It is just me --- other than my 80 year old aunt that lives with me and I look after, I have no family members that could give a darn.

My most pain-in-the-butt Lyme symptoms: my inability to often finish a sentence verbally; disorientation; having to read the same sentence 3 times before it sinks in; the headache / stiff neck that keeps my head under the pillow for days; joints --- let's not go there. Gut problems -- ditto.

Now I have seizures.

My biggest pain-in-the-butt comment from others: BUT YOU LOOK SO GOOD!!!!!

This morning I woke up and my very first thought was, "oh crap, another day". And then I went into the bathroom and cried on the floor.

I don't want to die, I just want a life better than this. And I can't seem to find the hope for this, or a God for this, or a way for this. [toilet]

The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

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Hi Miss Mari.

Are you in any kind of treatment right now?

Are you having a very rough time on treatment?

It's definitely financially devastating to have lyme. I could not afford COBRA either, and now find I'm uninsurable because of lyme.

Have you thought of applying for SSDI (State Disability)?

Please come here and vent away - it sometimes helps just to know others understand what you're going through.


Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
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Dear MissMari, and Michelle,

I am sorry you are both having such difficulties with insurance and stuff.

I consider myself lucky as going without health insurance after Katrina (my husband and I were both self employed and were not working)

I started back in March of last year. Thank God!!!!

I didn't get dx with Lyme until October of 2006. So, no pre-exist.

If you are without money or resources, can you at least get Medicaid?

Food stamps? Housing assistance?

After the hurricane and losing our house to a tornado, my Mom and I went and stood in line for 6 hours for the emergency food stamps.

Never felt too proud. It was a wonderful benefit. We still had a house note to pay,(no house) believe it or not electricity bill (even though we were without electricity for 34 days) and more.

I am so glad that with all of the other financial burdens, I did not have to worry about buying food.

I immediately applied for Medicaid for my children as we could not begin to afford their health insurance also.

Have you called your local churches or congregation. I am sure they would feel blessed to be able to help you.

Better days are coming. Remember your darkest hour is only 60 minutes long.

As Mother Theresa said "God never gives you anymore than you can handle. I just wish he didn't trust me so much."

God must really trust his children with Lyme Disease.

Sending positive thoughts and healing prayers to both of you.


Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
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don't ever hesitate about coming here to vent. we all need it sometimes. even those of us who are doing somewhat better. or even better than that. what am i trying to say? we get it. we speak the same language and we will never say things like you look so good. first of all, we can't see you, [Big Grin] but more importantly, we don't doubt your feeling lousy and hopeless because all of know what that's like.

i can only tell you my experience. i was very nonfunctional. i went around thinking i was the dumbest person on earth because i couldn't understand what people were saying, nor could i express myself. i was so tired i could barely make it through the work day and i live 5 minutes from my job where i got to sit in front of a computer most of the day. i couldn't do anything creative at all and i am an ex-art teacher and painter. i was a mess.

several years later and none of these things are true anymore. i can't say it was an easy recovery, but i have recovered.

please try to have a little hope in your day since thoughts create, in my opinion.

sorry it's so rough right now. sorry, no one in your family is offering a hand. that kind of rejection is truly terrible. i know from experience, unfortunately.

gotta go since i'm at work. shhhh don't tell anyone i was on lymenet. again.


some days you're the bug, some days you're the windshield  -

Posts: 1160 | From NY | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator

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Yes we all go through these times of despair.When my job showed me the door because I was a risk in the classroom due to cognitive/seizure/ balance and falling(due to lyme) issues my insurance was dropped,too because i no longer had a paycheck for the premiums to come out of.

Fortunately for us my husband was able to get insurance through his job. But we had to wait 6 months for long term disability to come through, during which time we ran up a lot of debt and had to sell our house.

The other day I ran into one of my former co-workers-I had just received the news of an abnormal SPECT SCAN which will probably mean a bit more aggressive treatment, my husband and I are separated, I don't know if I will ever make it back to work, yadayadaya-I felt terrible physically, very uncertain about the future, etc.

Anyway-the next day I got an email from this coworker saying it was good to see me looking so happy! Say What?

In hind sight I was actually relieved about losing my job-it had become really difficult to continue-in fact one of the most embarrasing things happened to me on one of my last days.

I crapped my pants [Frown] while on a VERY slow elevator-and had no change of clothes. Fortunately it was towards the end of the day. Talk about GI problems.

Last year at this time I was prepping for a total hysterectomy and bladder repair. It was the beginning of the end of my employability.

I maintain some sense of purpose by volunteering a couple hours a week. I still have faith that things will work out. Life will improve.

I am still involved in church. God is with me-and you.

So this has obviously been a good day for me-tomorrow-well, I could feel like you do. Intellectually I know on the bad bad days, this too shall pass-and it always does.

We'll hold onto your hope for you, and someday you will share it with others,too! Guaranteed. [Smile]


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mari and all,
i felt the pain, sorrow, and loss of income/insurance in each of your posts. life isn't fair, but we learn to deal with the hand we are dealt and make lemonade.

mari, take some time and look at many of the links i sent you this week:

. ssdi info is all after long list of symptoms;

. needs meds, etc. look for MINOUCAT and MELANIE REBER'S names shown; they have outstanding info to give all to help your situation.

. but you look good is i believe before long list of symptoms; send that by email to all who need to be aware and hopefully, MAY open their eyes to what you are going thru.

thoughts/prayers going to everyone of YOU. god, please step in and ease the burdens they each feel and provide something POSIIVE DAILY!
[group hug] [kiss] [group hug]

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I've noticed that Disability applications are routinely denied three times before accepted, so if you think you will need the benefits, its a good idea to start now.

One of the hard things about applying for disability is that you have to think like a victim. You have to insist how difficult your life is, and how sick you are.

It is the opposite of the same spectrum of putting together a job application, where you have to sell your good qualities.

If it is too hard to put together yourself, you can make an appointment with a social worker who can sit down and do the application with you.

If you are depressed (who wouldn't be) you can also have an evaluation for clinical depression due to a medical condition, to add to the list and give it more umph.

I hear you about the "how good you look" comments! Worst for me was when I was pregnant and couldn't keep down any food. I was afraid I was starving the baby, and people would tell me how jealous they were of my slim pregnant figure...

Vent away. You're among friends.


"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

Posts: 1918 | From Alive and Well! | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 8920

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hi miss marie and michelle

my heart goes out to you all - the pain, despair with out little understanding from family and friends can cause us to feel hopeless!1

i did have friend who went to the doc with me - he put me on disability0 though reluctantly- for 2 months - soley for my unexplained confusion.

all the symptoms you describe sound like those spirocytes are in the brain creating havoc. The toxins seem to magnify the depression and damage all the brain cells.

I can tell you that 18 months ago - dialing a phone number was so difficult and that has improved- rading was a major pain -- and yess reading the sentence three or four times was the norm- now that is improving also.

I was without insurance - no diagnosis - no job and 200 dollars to my name in October 2005

God - made a way and kept me alive -I know he love us- - i was about to give up on it all....

People do not understand the internal damage that is going on - -the old proverb - can 't tell the lyme book by its cover.

this borard has helped me immensely to vent - find out what works for some people- new ideas and some good humor.

I had to resort to herbs - basic foods to help me out of the lyme pit

If you can get rid of the toxins - you may be able to see some light at the end of the tunnel

will be praying for you all


Posts: 259 | From California | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator

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