Just venting about this #$%& disease. I've been suffering since 1996 and my kids shortly after that.
I've had a lyme headache for the past 2 weeks and I've had them before for even longer...months sometimes.
They ease up, but never go away. Then, they get really bad. Nothing helps...no meds at all. It stinks!
I can't plan anything. I can barely make it to work and cyber school my kids. Some days I feel like giving up. Now I know why some people succumb to suicide who suffer so much from lyme.
Family and friends can't understand the pain, mentally, physcially, emotionally, and financially this stupid stuff puts on one's life.
I'm so sick of being sick. I'm so sick of watching my children suffer through so much and being afraid they're losing their minds.
My daughter is scheduled to get a 2nd PICC line inserted in August. She is 14 yrs old. She had her first at age 8 and when they pulled the line, she crashed. We're both scared she'll do the same thing and this time we have to pay out of pocket.
I could just cry today. I cry myself to sleep at night worrying about her. All my kids have lyme and other co-infections, but she's the worst. It scares me to think of what the future has to offer her.
She can't do her school work, she can't remember, she gets left out of everything from other kids and has no friends, no one understands. She is on new meds for bipolar, depression, OCD, and anxiety her lyme and co-infections have given her and she's gained so much weight.
Other kids just look at her and reject her without ever knowing her or giving her a chance. She's so kind hearted (she loves making people happy) and sweet and only wants a friend. It kills me inside.
I would take her place in a second if I could. Although, I'm not much better off, but at least I can do my job and don't have to worry about learning new stuff. I wonder if she'll ever graduate.
Well, thanks for letting me vent a little. I have to stop now because my hands are killing me, as well as my head (lucky for you all ).
Take care everyone
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This situation breaks my heart. Lyme sucks.. no doubt.
Sorry you all were affected so badly!!!!
Is it possible your daughter could get a pen pal? That might make her feel more social?
I wish I had answers... but they are hard to come by in this situation.
She may also want to do some volunteer work... and I know her energy and time are limited... but a visit to a nursing home.. or a special event.. maybe Special Olympics... something to get her interacting with others?
She sounds so sweet... and loving.. so I am sure she would be a HUGE helkp to either of these groups.
Take care of you mom... you have a prayer headed your way.
posted
Thank you so much tincup for your prayers and for taking time to give me some support!
I am trying to get her into a horse therapeutic progam as a volunteer. I think it would do her a great deal of good to focus on helping others instead of thinking of her own troubles.
Besides, it makes her happy to make others happy, so I think it will be a good thing. I'm just hoping the PICC line won't cause her not to be able to volunteer.
Thanks again so very, very much! Thank you for your prayers!
Take care,
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
princesslee
I am sorry you and your family is going through so much.
I crashed after iv was taken away because at the time i wasnt aware i had a coinfection that wasnt adressed along with the iv , or directly after . (i have babs/lyme)
If she is on psych meds (anti depressent - mood stabilizer etc) ... some of them can actually cause weight gain on their own so hopefully the iv will take care of her "brain" symptoms
then she wont need those meds anymore.
I hope she can get into the horse volunteer program it sounds like an excellent idea.
There isnt a pain med that helps with my headaches either... but if i dont drink "enough" water (which is alot) my head hurts more.
If it isnt too bad a put a warm moist heat heating pad on it but if it is too bad then my head cant take the pressure against it.
I hope things start getting better for your whole family very very soon
posted
Azure wish, Thanks for your feedback! She is on meds for bipolar, depression, and OCD and yes it caused great weight gain...26 pounds in 3 weeks!!! AAHHHH!
I'm praying her psych symptoms will disappear after treatment and she can go off those meds. That would definitely be an awesome answer to my prayers.
I found it interesting about the coinfections, because she has babesiosis, bartonella, erlichiosis, and she did test positive for Rocky Mtn. Spotted Fever at one point. Although, I'm not sure if that is an issue right now.
Do you happen to know what the LLMD's normally give for co-infections after IV?
Thanks so much for your support!
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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posted
I am so sorry because I had a raging headache for over 2 weeks before I finally found a combo protocol that worked for me.
I am now on Omnicef/Flagyl and most of my nagging symptoms are slowing going away.
I wish you well in finding a solution.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
First of all, I hope that your daughter finds something that gives her joy and some peace. It is so hard being a kid, let alone a sick kid, with a disease that most people just don't understand....let alone other children.
Praying for a friend to intercede in your daughters life....perhaps it will come in the way of a neigh?????
As for you and your headache. I can relate. I have had one everyday for 9 months. Some days are better than others, some I wish for "an end it all" pill. Nothing so far has worked for me.
I hope that we all eventually find our magic bullet, and that people become kinder and more understanding of good folks like your daughter.
I'm sure that your heart is breaking, but, always, always, there is hope.
, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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