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Posted 9/22/2009 6:21 PM (GMT 0)
Sorry everyone...here is my depressing post.

I cried for like 2 hours last night. I had to quit because it hurt so bad, and I prayed enough that God took the pain away long enough for me to go to sleep.

And now, I am crying again. I got denied my disabity clalim and I don't know what to do. I just called an attorney that was recommended to me, but I have to wait until the 30th to see her and get any of my questions answered.

I don't have any money. I can't work. I just don't know what I am supposed to do. I feel so hopeless and helpless and my family is so disappointed in me. I have always been the disappointment of the family, and this is just another disappointment. I was told the other day that everyone has pain and you just learn to live with it. They are ashamed that I am not working and that I applied for disability in the first place. Now, I am just supposed to get a job and work through the pain. My anxiety is so bad that I can't do that. And my depression along with the pain keeps me from even getting out of bed most days. What am I supposed to do?

Does anyone know of any legitimate work from home things? I have to do something but I just have no clue what.

Thanks for listening

Posted 9/22/2009 7:28 PM (GMT 0)
Keep trying for the disability and don't worry about what you familys thinks. You have to do what is best for you. I lost my job due to lyme disease when I was 23 and just out of college. I went on disability because I was too sick to get out of bed let alone go to work. I didn't get denied, but it took time to get accepted and start getting my payments (which were not very much). It usually isn't enough to live off of, but depending on your situation (maybe you live at home still), it helps. Most people who do not have lyme disease do not understand that it isn't something you can just live with and go on like nothing is wrong. It can be a huge disability just like any other disability, but unless you live it you don't really know just how bad it can be. I too had horrible anxiety and didn't leave the house for a long time. Go see the atty and fight the denial.
Posted 9/22/2009 7:44 PM (GMT 0)

Hi,  I'm sorry you are feeling so bad,  and I understand the frustration and sadness,  too.  It seems that about every 5 years or so,  I go through some lifechanging incident that takes about two years to recover from. 

I've been crying today too,  so you're not alone.  I know what it's like to just want to be well and have a normal life,  until a few months ago,  everything was going perfect,  then I got 4 bites from the end of June through the beginning of August (I'm just calling it July) and now I'm sick again.

I've been thinking about trying to find something legitimate to make money from home also.  I'll post here if I can find anything.  One thing I would suggest is,  if something looks like an opportunity,  Google their business name and see if there are complaints about them etc.  If nothing can be found but you're not sure,  and they have a business address listed,  try calling their local Chamber of Commerce or researching them on the BBB to see what you can find.

I know sometimes it feels like no one cares or no one understands what you're going through,  but plenty of people here do understand and I'm sure you'll be hearing from many of them soon.  You will get better,  and the illnesses we suffer can't be kept secret forever.  Did you know Michael J Fox has Lyme Disease?

I read that the best way to show that you should be eligible for disability is to keep a journal,  not excessively detailed,  but enough about your daily experiences to document how your illness affects your ability to function and how it prevents you from leading a normal life.  I read that,  in the end,  it is the daily struggle with your illness and record of it which will win your case--not general descriptions of how you feel or doctors' opinions.

For example: Monday, (Month, day, year) woke up 10 am,  with extreme joint and muscle pain,  migraine,  stumbled to bathroom,  had diarrhea all day.  Severe nausea,  slept on floor near bathroom most of the day.  Took pain medicine (type of medicine) and pepto bismol,  didn't help.  Ate crackers and drank water,  couldnt tolerate any other foods. Sweating heavily on an off all day,  fell asleep for the night at 8pm.

Tuesday (month, day, year) Today woke up at 12pm, drenched in sweat,  joint and muscle pain worse than yesterday,  so bad all I can do is cry.  Nausea not as bad,  still diarrhea all day,  migraine makes it hard to open eyes,  exhausted.  Took different pain medicine (type of medicine).  Took highest dose of Parkinson's medication (type of medicine) today due to uncontrollable body movements.  Was able to eat cereal and an apple today.

Wednesday (month, day, year) I don't know if I'm going to make it today.  Everything is really bad today.  Too sick to write.  Would call 911 but can't afford hospital.  Called my sister. She came after work.  All I had today was water.

(This is not my actual journal,  just an example,  though some days come pretty close to this and I do have these types of symptoms.)  But you see how this holds more weight than............."well your honor, i get headaches, muscle pains and nausea and sometimes muscle spasms and I almost went to the hospital last week."

Don't ever put anything in it that isn't true,  but you see an example of how keeping track of symptoms will have an impact.

I really hope you feel better soon!  Take care and good luck with getting financial help for your disability!

Posted 9/22/2009 8:20 PM (GMT 0)
Thanks so much everyone. I did make an appt with that one attorney and then I called one of the "big firms" that is advertised on t.v and such. Spent over an hour on phone giving him my life story and now have to look at the forms he emailed me. Also, requested a free consult from another big firm, so we shall see. It did make me stop crying for the time being...well, that and the headache it was giving me!
Strongmom..I actually started doing that journeling thing like three weeks ago! I didn't even have a real reason other than to document it for myself and a doctor if they ever cared enough to look. But, like everything else, I quit. I will start that up again. If they are willing to look at it then maybe they will understand. I am sorry you are crying today too:( This complete feeling of helplessness is just awful.
And, thank you for the comments about my family Jeminij. It is so hard for me because I have always felt that I live in their shadows. I try to make them understand but they just don't and they make me feel like crap every single chance they get. My Dad doesn't. He has been paying my bills for the last year and helps me when he can. But, I have a feeling that he can't afford to help me anymore because of the way he has been acting. If he can't help me financially then I don't know where I would even live. I am so scared and nervous, and when your own family treats you like a lazy bum it makes it that much worse. I have seriously considered cutting them all out of my life, but then the feelings of guilt take over and I feel even worse. Lose Lose.
I did not know that Michael J. Fox has Lyme disease...does he have that and Parkinsons?
Posted 9/22/2009 8:36 PM (GMT 0)
www.workathomesos.com

Hi everyone!

An "old timer" from HW, Imakatt2, sent me this website she set up to help people that need to find legitimate jobs from home.  It lists resources.  I have not had to use the info yet but I know she would be happy if it helps some of you. 

Best wishes,    bablymers mom

Posted 9/22/2009 9:53 PM (GMT 0)
Well,  there is substantial documentation that people who have untreated progressive Lyme Disease can develop Parkinsons.  That doesn't mean they will,  but,  if you Google  Parkinsons and Lyme,  you will find there is a strong connection.  Considering he started suffering symptoms at such a young age and he has also been diagnosed with Lyme,  it makes sense that Lyme would/could be connected to his Parkinsons.

Posted 9/22/2009 11:03 PM (GMT 0)
Hi alone&scared,

The majority of the time it is normal to get denied the first time but most get approved the second time.  So please don't give up hope, okay?

I most certainly understand about your family not understanding..  I've been there and it stunk.

Perhaps one of the members here has an extra copy of "Under Our Skin?' and they can mail it to you?  If I had a copy I would send it to you so your family could watch it.  Maybe then they could help you out.

Are there any family members that you talk to via e-mail?  If so, perhaps send them this link:

http://www.youtube.com/watch?v=sxWgS0XLVqw

If you want, e-mail me, just click on the envelope under my "member name" on the left.

Sending you hugs,

Denise

Posted 9/23/2009 12:04 AM (GMT 0)
alone and scared - I could've written your letter myself! Oh, I know how terrible it is. I was lucky that I had disability insurance thru work that "carried" me until my SSDI was approved. My problem is that I was always the "over-achiever". I worked like a dog, but made good money, married a man with a little moola, life was heaven on earth, my home and back yard are like a paradise, life was great, and then I got sick. So now I stare at my paradise backyard through the windows of my bedroom...everytime something new goes wrong, no one gives a rat's patootie and I feel like a complete burden.

I threw up all night Sunday, was in complete pain yesterday.... and self-medicated today with some stuff I found... old Rx's of quasi-pain relievers (glorified Tylenol) that didn't work. Anyway, I could go on and on... sorry to high-jack your posting with my own BS. It is just that sometimes when I read what you guys have written, I can feel it in my gut. A lot of times the postings just hit too close to home and I can't/don't respond.... or I get in a smart alec mood and try not to write or say anything I'm going to regret later - lol!

You are not alone... you belong to a very specialized "fraternity" of Lyme patients... I keep thinking there has got to be a cure.. What's the cure? 9 years of this. I cannot believe this is my life.
Posted 9/23/2009 12:26 AM (GMT 0)
alone&scared,

I'm so sorry hun! I wish I could give you a hug. Reading about your family makes me so angry. I, too have family like that and I am also the black sheep of the family. My family is very selfish and could care less about me. I've learned to let go. Sometimes, you just need to do that to get better. Your health is on the line and you are fighting for your life. You don't need the added stress. Worry about YOU now! They have no clue how much you go through and how some days you feel like death. Most people are ignorant about this disease. Look at that doctor I talked about. Get yourself better first, then you can deal with them later when you are stronger. Letting go hurts at the beginning, but then you start realizing how less stressful you are. Believe me, I know. I haven't talked to my own mother in two months.

about the disability...like someone else mentioned, you usually get turned down the first time. I would bring in that daily log that someone mentioned above. I think that may help. If I find more information for you, I will let you know.

I was looking around for a picc line cover. Just something to cover my picc line when I went to the doctors office so I wouldn't get stares and only found one person making them. If you can sew, you might want to look into that.

Big hugs hun! I hope you feel better soon! Email me anytime you need to talk.
Posted 9/23/2009 12:39 AM (GMT 0)
Alone&Scared,

Gosh- I just want to give you a hug. I can understand how you must feel. I know I've had nights where I'm crying so hard it hurts, and I just pray I fall asleep soon. Hopefully sharing with us made you feel a little better though? I know that talking to people here has given me hope that I can get through the tough times.

I think one of the most terrifying things about Lyme is how helpless it can make you feel- financially, physically and emotionally. Keep trying with the disability- a good lawyer could do wonders for you.

I don't really know what to say about your family. So many of us have the same problem. Thinking about cutting them out and actually doing it are two very different things. No matter how hard you tell yourself it doesn't matter what other people think, when your family disbelieves you, it really hurts. I'll be praying they come around for you.

Hugs!

Nicky
Posted 9/23/2009 12:42 AM (GMT 0)
My mother has NOT once come to help me in any way shape or form. She lives about 45-50minutes from me.... I haven't talked to her in over 5 years because she hung up on me.... because I wouldn't drive to her house to take care of her 9 days after she had minor laproscopy same day surgery for removal of a benign polyp! (It's a long story, but that's the Cliff Notes version). Man oh man... my Dad has FINALLY come around and actually is paying attention to Lyme news, etc. because I finally got him to watch the DVD Under Our Skin. He lives thousands of miles away, but now calls once or twice a week. My husband is a saint, but even he has hit a wall with it all lately. As great as he's been, I know he's over it.... it's just too much and he has to get on with his life. He took my youngest step-daughter to France on Sunday to visit my oldest step-daughter. She and her boyfriend are working in France for 3 months at a vinyard. I am so jealous/envious, but at the same time, I'm really happy for all of them.... but I'm home alone and I'm sick and I'm scared and I have big appointments tomorrow.... and I'm not well enough to travel. I'm missing out on so much of my life.
Posted 9/23/2009 3:19 PM (GMT 0)
Hey - I am not sure if this will help you but it may be worth looking into. My daughter (20 year old, CDC positive Lyme test, college student) recently started working with a vocational rehab counselor. Apparently each state has an office like this that's main focus is helping people get back to work. They provide anything from counseling, training, money for school, transportation (if you are in a wheelchair they can help outfit your car to accomodate it), ramps at home, computer, etc. I honestly don't know all that they do, we kind of stopped at the money for school part of it and are trying to get her some assistance with that. They ask for documentation of your illness, doctor's reports and such, and they help you with whatever resources they have available. I looked into it for my son, he lives in Florida, and they have an office there too. Once we get her settled we are going to see what we can come up with for him next.

Hang in there!

Marika (formerly known as Pomfrey)
Posted 9/23/2009 6:48 PM (GMT 0)
Pomfrey - Yes, one of these days I'll get to be rehabbed too! I just keep waiting to get into a half way decent health to start rehab - lol! But, I am looking forward to it and I think my LTD policy from work may pay for me to go back to school - or somehow subsidize rehab into another profession.

I think it's a good idea.... I just need to land first.
Posted 9/23/2009 11:45 PM (GMT 0)
Jelaine,

Do we have the same mother?   My mother was horrible to me when I was sick and also would hang up on me..  It really hurt.  No one in my family wanted to understand lyme as well as friends..  I found out who my "real" friends were.

This disease really isolates a person.  It has to be the most lonliness disease of them all.  So I learned to live alone, be alone and fend for myself since I never got any support from anyone except my animals. 

Did it hurt?  Of course it hurt..   I had days where I would have crying jags with the darkest thoughts..  Once I called my mother and told her I was going to drown myself with my 2 dogs (they were alive then) and instead of talking to me, she called the cops on me, nice huh?

Everyone here can get better, darn, if I got better then everyone else can too...

Hang in there all,

Denise

 

Posted 9/23/2009 11:58 PM (GMT 0)
alone&scared,

Where are you hun? Are you okay?
Posted 9/24/2009 1:22 AM (GMT 0)
I'm sorry CG! I am ok. I was crying when I posted this yesterday, but even after the first few responses I didn't feel alone anymore. You guys really help me out so very much!
My mother doesn't hang up on me. No, she has to "one up" me. You know, I have a headache, so she has the most terrible headache anyone has ever had AND her stomach hurts. Or I had a bad day, but HER day was sooo much worse than mine was.etc. I try really hard not to take it personally because she does this to everyone in the whole world, but some days I am just not in the freakin mood. And what is really bad is when I get that rare day when I feel ok and I talk to her and after 2 minutes on the phone I am depressed because she is so negative. Well, her and the stress I suffer from her is a completely long and different story, but I am sure that you understand!
JElainep..."high-jack my post"****. No worries. I feel like I do that to people's posts all of the time. I start just trying to explain that I understand and they are not alone and end up venting my own hostilities. It is just so easy to do. I am sorry that your mother hung up on you. You too Deejavu. It is crazy how selfish some people can be.
Thank you everyone for all of your posts...for the help on getting assistance with my disability and the work at home link. I am going to check that out now. I am just so overwhelmed right now. i need money to pay my bills, but I can't work. And, I applied for a job today, but even if I get it I think that will screw any chance I had at getting disability and I will probably end up having to quit right away anyway. It should be illegal for them to make this process take so long.
But, I am going to try super duper hard to stay positive and just go with what God tells me to do and pray for the best. Thank you again for all of your help and I am going to do some research now:)
Posted 9/24/2009 2:58 AM (GMT 0)
alone&scared

Deejavu is right on...SSI just about always turns everyone down first try...so appeal and if turned down do it again. When your approved your first check amount will be from the first date you applied.
A very good reason not to give up.

Maybe give it a second try before hireing a lawyer, most people win on the appeal.
With a lawyer he will get a portion if your monthly check. Only go for a lawyer if all else fails and the TV lawyers are a very good choice.

Jane
Posted 9/24/2009 10:53 PM (GMT 0)
Deejavu - I always said this disease was one he11uva way to find out who your friends are... and boy was I shocked. The few who have stuck around have been a real blessing and a real surprize... the one's that didn't.... well that shocked me too. But my husband has been a saint, I am very lucky to have him... he is the one and only person who did not doubt me for one second, even when I doubted myself!
Posted 9/25/2009 12:30 AM (GMT 0)
Jelaine, oh yeah, I really found out who my friends were (not many)..  So I stopped talking about lyme disease because I knew what kind of reaction I would get.   If I was asked "how are ya?" I answered "hanging in there"...  or something neutral.

I asked my husband to leave because he kept yelling at me because I couldn't do the things I did before I got sick.  Yet when he was sick with crohns I took him to many doctors, taking off time from work, babying him, everything.  But when I got sick, he wasn't there for me at all.  The stress became so unbearable that I just couldn't take it anymore and said to him that it would be better if he found his own place.  And eventually he did and years later we divorced.  I wonder if I had a diagnosis of cancer if he would have been there for me..   Oh well, it's all in the past now.

Alone&Scared,

I can really relate to your story about your mother.  And yes, my mother always had to be worse compared to me no matter what.. 

Example:  When I was 17 I was run over by a car when crossing a street and almost died from that, well my mom acted like it happened to her.  

I hated being home with her and when my wires came out (my jaw was wired up as well as 100 other things) I went back to work just to get away from her and I had lost most of my upper teeth but went back to work anyway with all my coworkers calling me Grandma!  When I got my temporary bridge the entire office applauded, LOL!  Point being I was desperate to get away from her!  Sorry for rambling...   Memories...

Denise

Posted 9/26/2009 4:16 PM (GMT 0)
Oh Denise that is terrible! Just terrible! So many woman go through that with their husbands. So many men (well,and women) think that they should be taken care of a Babied, etc. and that they should not ever do that for anyone else. I guess the "in sickness and in health" part he didn't hear. I am so sorry!
Wow....run over by a car and she still tried to get all the attention. I don't understand what causes some people to do that. It is so frustrating. You must have really wanted to get away to go to work with no upper teeth!
I am glad that you are not with your husband anymore though. He wasn't worth it. No offense, but you deserve someone who loves you and will take care of you gladly:) We all do! Unfortunately, I don't know where to find those ones!
Posted 9/28/2009 12:28 AM (GMT 0)
Hi alone&scared,

Awww, thanks for the beautiful words..  Yeah, life hasn't been easy for me..   As far as going back to work with no upper teeth, I really didn't care because my mother was driving me nuts and I remember I did call up work first to see if it was okay with them (hey, that was 1975).  

I tried to have fun with that accident because it was so horrible.  I had many operations on my left arm and one operation left me with a cast from my shoulder to my hand.  I was told NOT to drive but I drove anyway..  I even went to meet my friends at bars back then and I would joke around with the guys and tell them if they gave me a hard time, I could do serious damage with that cast!!  

I guess life is all about choices and we do pick our attitudes like Charles Swindoll says..   Trust me, I had and still have my bad days...    I have days where I start feeling sorry for myself (not lyme related)..   I am human and just try to do the best I can.

And yes, I have a great guy who treats me like a princess!

Denise

Posted 4/17/2016 10:41 PM (GMT 0)
I googled "lyme" and "crying" and this page came up. I can't stop crying- I cry several times a day at work, and it's embarrassing and hard to hide. I come home and cry for at least an hour every night.

I think I got Lyme over 6 years ago. I was misdiagnosed for 4 years (first plantar fasciitis, reynauds and rheumatoid arthritis, then mold toxicity, and a whole bunch of other things too stupid to list).

I started to feel better last fall, so I applied for a new job. Since I started it 5 weeks ago, all my symptoms have been coming back, just as strong as before I started abx. I'm in so much pain and I'm so tired, I don't know how I'm going to make it through a day of work every day. I wake up in pain and stay in pain. I barely sleep but I am exhausted.

I work in a museum, so I'm expected to walk and stand for much of the day. I can barely handle the things I am asked to do. I don't know how I'm supposed to continue supporting myself, getting up and going to work every day, when I can barely function. I am single and live alone. What is supposed to happen to people like me? Where am I supposed to live when I can't work anymore? How am I supposed to work to support myself when I can barely walk?

I think all this crying might be part of a herx, but really I just feel so sad and upset over what my life has become. I just wish I didn't cry in public. I know it's just a matter of time before my supervisors talk to me about it.

Anyway, I thought typing all this out would make me feel better, but now I'm crying hysterically. Thank you for being a forum here- I've been reading things on it for years, and it's nice to know I am not completely alone- there are people out there who feel like me and understand.
Posted 4/17/2016 11:07 PM (GMT 0)
meganmo, you are not alone. I swear that lyme does something to our hormones. I am a crier too. I spent a couple of months really down and crying. I actually went to a doctor and talked to her about depression. She was so nice and gave me a prescription. She said that it was a type of pill that I had to take every day and that in order to quit it I would have to wean myself off.

I came home and put that prescription on my desk where I could see it constantly. It was a great comfort seeing it there. It was like a life buoy of my sinking ship that I could reach out and grab.

Honestly I think it made all the difference in the world to me. I never got it filled but it was there if I got desperate enough.

The comfort of it and staying on my treatment and lots of detox got me to a much calmer place. It did not happen right away. It took time. And it took me being patient being sick. I have never been a sick person and being sick was at the most 5 days maximum. Learning to be sick longer than that took some patience on my part.

It still is sad that I had to learn to be a sick person, but I always count my blessings.

I wish I could come over and have tea with you and give you a helping hand. I know if I can do this, you can.

Detox, eat healthy, get good sleep and stay on treatment. You will get there.

If you need to email me just click that envelope below my name.

We are all here to help one another.

I am so very sorry you have lyme. It stinks that we have this horrible debilitating disease in this day and age that is not recognized or quickly treatable.

Welcome to our community and I hope we are helpful.
Posted 4/17/2016 11:30 PM (GMT 0)
Thank you for that, it's nice to hear from someone who understands me.

I talked to several doctors about depression over the past 4 years. They all prescribed different antidepressants for me, which I tried to take, but they all kept me wide awake all night. I barely sleep as it is- I lightly drift off and jerk awake, all night long. I can't take a med that interrupts the few precious minutes of sleep that I have.

But I'd like to feel better about life and stop crying. I really don't see the point of having to live like this. I'm in pain, I can't do anything except work- every scrap of energy I have goes into trying to do my job, just so I can keep a roof over my head.

My LLMD says antidepressants won't really help me anyway, because it's the neurotoxins making me so depressed, not a chemical imbalance.

Anyway, thanks for listening.
Posted 4/18/2016 12:55 PM (GMT 0)
Abx treatment & sleep deprivation can sure make can you low. Doxy initially is used & effective by most docs, but boy that can mess up the emotions, too (along with herxing). Maybe rather than an antidepressant, something to help you zzzzz &/or a switch up on abx? So sry you are going thru this. Folks her truly understand. Hang in there. Hugs to u (()).
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