posted
After posting on the medical questions sections about Lyme and my thinking I was re-lapsing I received great information and the majority of people here seem to feel that an infectious disease doctor was not the best way to go (unless they are lyme literate- which mine was not) I decided to seek out a LLMD and found one in my area.
The problem is of course money. I am single, 34yrs old and recently quit work due to feeling so sick (therefore no insurance or income!) I have a little bit in savings that I really need to keep to live on the next few months....
Long story short is that my father is the only one I know who would be in any financial position to help me out with medical bills. I just got off the phone with him and am in tears. He thinks I am being ridiculous in not going back to the infectious disease doctor and will not help me out with money to go to a lyme doctor- he said they do not sound legitimate to him. I tried to explain what I had learned on this site- which of course he says I am also being crazy to take advice from people I do not know who are not doctors(even though people on here have had A LOT of experience with this disease!) I think he might help pay for the infectious disease doctor - but I really DON'T want to go back to him.
Mind you this infectious disease doctor actually laughed at me when I had the palsy in my face in the hospital! I'm sure I was quite a site but come on... He also said I would not have to worry about reoccurence of Lyme ever- but here I am.
Is there anything I can do to help my father understand? I am so upset right now I almost don't care- but he is my only hope for money!! I know that sounds horrible but it is true. What do you do when the only people you have don't believe you either? I'm feeling like I really don't want to go on anymore. This is too hard.
[ 22. November 2006, 05:32 PM: Message edited by: limeyinmd ]
Posts: 7 | From Maryland | Registered: Nov 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
oh i am so so sorry you're going through this. i really don't know what to say except i understand, at least somewhat. when i was at my sickest absolutely no one in my family believed me; in fact, they all thought i was crazy, and my mom and grandparents actually had me committed to a psych ward for what turned out to be 4.5 months (the worst hell i've ever experienced) - i was 'diagnosed' by a terrible, cruel psychiatrist as having 'somatic delusional disorder' (despite CDC positive igenex results; but obviously i was just insane and had 'convinced' myself i had lyme), put on heavy dose anti-psychotics, and escaped forced electroshock therapy by a hairsbreadth. during this whole ordeal i was so sick i could barely think or walk or eat or lift my head off my pillow, i weighed about 90 pounds, and my hair was falling out in clumps.
anyway, sorry to go on for so long - but yeah, a lot of people unfortunately have trouble with getting their families to understand. i was incredibly lucky in that for some strange reason my grandfather eventually paid for my lyme treatment, despite the fact that he still didn't believe me (old age? senility? sounds horrible but i can't think of any other explanation). he has a boatload of money and if it weren't for him i'd still be desperately ill and probably out on the street by now. i was 24 with no insurance and was wayyyy too sick to work.
my mother was one of the main people in my life who thought i was crazy.. but for some reason she believes me now. i guess it had to do with how much she saw me improve with treatment.. i don't know. but she completely believes and supports me now and though i wish it had come sooner, it's really nice to have her back. she has told me she doesn't know if she'll ever be able to forgive herself.. but i've forgiven her, and we're so much closer because of it. i really hope your father comes around too.
i wish i had more concrete suggestions on what to do.. just keep talking to him about it, print out stuff about chronic lyme for him to read, including established/credited medical abstracts from ILADS, etc.
posted
Hi there! I'm so sorry you're having such an awful time.
I went through a similar experience with my mother. She discouraged my learning things from the internet and talking on this forum. She was excited when a rheumatologist diagnosed me with fibromyalgia, thinking I should just drop all of this and move on.
She knows I'm not easily influenced. I'm not one to believe unfounded claims, I'm not one to make things up or to exaggerate or to have a bad attitude.
Then she attended a lyme support group meeting in our area that I couldn't make it to.
She called me as she was leaving and said, with amazement, how every person there told my exact story. How she learned so much. How I should have been there to be surrounded by people who were going through what I was because it was so comforting.
Since then she's been much more understanding and supportive. I feel like I can tell her things I didn't before because she no longer has the "my daughter is crazy" thought in her mind.
Is there a support group meeting in your area that you could convince your father to go to? Seeing real people going through what you are may help him understand.
Try to keep your spirits up, and know there are a lot of people on this forum who understand what you're going through. You're not alone, and we're all here for you!
My thoughts will be with you. Please keep us posted, and hang in there!
Posts: 106 | From Michigan | Registered: Oct 2006
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posted
Thank you for your words. It is funny that I was reading your post when you were reading mine. I don't have a lot of words of advice today either, but you are in my thoughts! Posts: 240 | From MA | Registered: Nov 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I hope people from Maryland are getting in touch with you.
I really like the idea of getting your dad to attend a support group meeting, or maybe if he could go to lunch with you and 2 or 3 people who have Lyme and are getting help, it would be effective.
Maybe if you could get him to go to a Lyme doctor's appointment with you he would see that you are really suffering and need educated help.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm sorry you are having to go through this with your family. I was very lucky, in that my mother pushed me to pursue the Lyme diagnosis.
She was not happy to have me settle with a fibromyalgia diagnosis, and was able to connect all my symptoms back to my bulls eye rash she saw when I was 12.
I agree that sending your father information from the ILADS website might be very helpful. They have scientific information, so it is not just stories of people on the internet.
Maybe he would also react to the news that the CT Attorney General is investigating IDSA. Can Daddy really trust a doctor who is a member of an organization under investigation for anti-trust?
You might also have better luck with a more conservative LLMD. There are some LLMD's who use a lot of alternative medicine and some who are more mainstream medicine. Your father might be more comfortable with a doctor he sees as more traditional, who still is an LLMD.
And also maybe your father can come to a doctor appointment with you? I'm not sure if he lives near you. My mom comes to my LLMD appointments with me...she flies in from out of state. My step-father sometimes questions her about my treatment, because he has never been to my LLMD's office.
Is there another family member you can get on your side? Remember, your father is probably looking out for you. It's hard for parents to see their children sick, so they sometimes go into denial about how serious it is.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote: I am single, 34yrs old and recently quit work due to feeling so sick (therefore no insurance or income!) I have a little bit in savings that I really need to keep to live on the next few months.... Long story short is that my father is the only one I know who would be in any financial position to help me out with medical bills. I just got off the phone with him and am in tears. He thinks I am being ridiculous in not going back to the infectious disease doctor and will not help me out with money to go to a lyme doctor- he said they do not sound legitimate to him.
Wow, that is my story. Nearly identical, even the ages, although I recently turned 35.
Others have given you good advice: try taking your father to support groups, give him reading, and when you have your first appointment with an LLMD ask him to join you.
I have been ill for two years and my father refuses to believe that I have lyme or support or help me in any way. Initially he came to my appointments, he has seem in hospitalized and in the ER. He has even seen the dramatic improvement I have made since getting treatment, and yet he is in denial.
Until recently, talking to my father would put me in a state of panic and grief. He still refuses to believe, states my doctors are all "frauds" and he refuses to sponser their illegal activities.
I thought I could only get better if he loved and supported me. It's natural to turn to our parents in such time. Gradually I have come to believe that my recovery does not depend on my father supporting me. It has been freeing in many ways.
Look at other resources: SSDI,SSI, food stamps, temporary assistance, credit cards, church, other family and friends. It can be daunting when you are ill. That is where we can help, to support you and give you guidance. Melanie Reber has compiled a thorough list for financial resouces. I'll try to find them and post them here.
And most important point: You will go on. I did when I thought there was no point or hope. So don't delay your healing. See your LLMD as soon as possible.
Please PM if you would like to chat further.
Posts: 628 | From the south | Registered: Dec 2005
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This disease is tough on the person afflicted, but it also tears at the heart of those who have to watch the effects it has on our loved ones.
Parents, fathers in particular, like to be able to fix things. This one can't be fixed with money or tools or anything else.
It puts fathers in a position they are not used to being in, they can't control it or make it better.
Okay, enough of that. I'd love to communicate with your fathers. The only thing I can offer is my daughter's story and how we've come to grips with Lyme.
You are both in our prayers.
LymeDad
[ 22. November 2006, 06:24 PM: Message edited by: lymedad ]
Posts: 681 | From California | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hiya, I can't say anything better than what's already been said. But this the link Serendipity was referring to.
Lymedad, Wow, you have me in tears. That's really a great thing you are willing and offering to do. Your daughter is very fortunate to have you as her dad.
Wanna adopt another? (Ok, I think I may be older than you but that's probably irrelevant.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Lymedad, Now I'm crying also. And I rarely cry. I read in another thread that you are working three jobs to care for your daughter, and you see that as a small price to pay for her health. What a special man and father you are.
I am touched by your generous offer. It may be a waste of time. More than that, I don't know if I can be disappointed another time by my father.
It is the caring of others, many of them strangers, that gives me hope.
Lymeinmd, I hope you do take lymedad up on his offer. With time your father may come around. Take care of yourself now though.
True, Thanks for finding the link
Posts: 628 | From the south | Registered: Dec 2005
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I'm just about as old as dirt, so I doubt you're any older than me.
I think I have adopted most of all of you here on LymeNet already.
I find that all of you help our family through the way you share your feelings, your experiences and your knowledge. I look forward to reading as much as I can, you've all helped us tremendously.
I'm no better a father that anyone else. I just happen to have a lovely young daughter who is very ill.
She didn't ask for any of this and it is completely out of her control. What else can a parent do, but help.
A lot of times men have to learn to swallow their pride and egos when they run into something they can't control.
We have to keep the faith; faith in God, faith in each other and faith in our families. One day all of this will be cured.
I hope you all have a wonderful Thanksgiving.
Posts: 681 | From California | Registered: Oct 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
lymedad your offer is truly beautiful and generous. i echo what's already been said -- your daughter is very lucky to have you.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by lymedad: trueblue,
I'm just about as old as dirt, so I doubt you're any older than me.
I think I have adopted most of all of you here on LymeNet already.
I find that all of you help our family through the way you share your feelings, your experiences and your knowledge. I look forward to reading as much as I can, you've all helped us tremendously.
I'm no better a father that anyone else. I just happen to have a lovely young daughter who is very ill.
She didn't ask for any of this and it is completely out of her control. What else can a parent do, but help.
A lot of times men have to learn to swallow their pride and egos when they run into something they can't control.
We have to keep the faith; faith in God, faith in each other and faith in our families. One day all of this will be cured.
I hope you all have a wonderful Thanksgiving.
Thank you Lymedad, I am a tad younger than dirt. You've got me in tears again. What I have bolded above is so-so important. It is exceptional from my view point. It is truly a gift to be able to be that way. Not all parents can or do or are willing.
My father never would have and my mother cannot grasp, understand or help and advocate for me. She thinks I am imagining things. I've given up trying to get across. She flat out doesn't understand and will not move out of her comfort zone of a Lifetime watching fantasy land to know what is going on 3 feet from where she sits. I do not bother to tell her what's going on and she doesnt ask. She is incapable of being any other way.
My family is not and has never been blood. I am eternally grateful for my long standing friends and the folks I have met here. That's where my family is.
Thank you
Sorry for the extended highjack lymeyinmd I'd take Lymedad up on his offer, what could it hurt? there is only something to gain. I hope something can be worked out and your relationship with your dad helped and able to grow.
Much love and good luck, I do understand, trueblue
I hope you all have a great Thanksgiving.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Wow, You are all so truly amazing and generous!
As I was preparing to crawl back to bed and spend my Thanksgiving there I was thinking that I did not have much to be thankful about this year- I was wrong! You are all truly keeping me going.
It has restored my faith in possibly getting better but also in humanity! No joke.
Lymedad- Thank you so much for your amazing offer. I do believe it is worth a try. Like Serendipity, I'm not sure it will do any good- he is pretty stubborn and tends to always think he is right. But I really do want him to try to understand this. I will PM you his email. Thanks again- it really means so much!
I hope you all have a wonderful Thanksgiving! Posts: 7 | From Maryland | Registered: Nov 2006
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Cobweb
Unregistered
posted
Come get the support of your Lymenet family on November 30th. Several from Maryland are going-including me-from the Balto area.
Come join humanity-in the struggle against inhumanity! I'll give you a smile and a hug in person-how's that for support?
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Lymie, it is hard for anyone to comprehend these tick borne diseases. It is like the Twilight Zone, the Hell that is created but every time I pinch myself, it is still here.
I think there are 3 support groups in MD so far. One in Harford Co, one near Easton and one near Salisbury. YOu should be able to do a search and find some info about each group and perhaps contacts and meeting times.
And it is very hard to explain this to a non-believer. Most in our combined families just leave us alone. Don't help, don't call, don't ask. The news is never good and they want resolution. Hell, we all do but it hasn't happened.
YOu need to find a good friend that does believe in you and hang on to them to help you thru the rough times. Sometimes they are better than family.
If you go up to the top section under post a reply and do a search, there is a topic about what to tell your family and friends. Of should be something like that.
It might have some ideas to help.
And Carol's idea of going to NY to the Rally is good. Tell your dad you are taking him on a bus trip to NY..If he comes, he will be captive and should learn enough to never question this again. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm going to chime in here just to say that all of you are not alone about family memebers not understanding or beleiving in us.
Heck I personally think that was one of the hardest things that I had to deal with along with this illness - no one in my family understood me and accepted my possible fate, it hurt so bad back then and still brings tears to my eyes today.
I will never forget the day that I had to yell at my Mother "F-U" when she refused to rush me to the hospital because all the doc's had her beleiving I was crazy - my husband was the same way as well as his family and the rest of mine. I said I guess I should be bleeding to death in order for everyone to beleive me HUH, maybe they needed to see physcially - like some blood on the floor - but because they didn't I guess I wasn't sick you know!
To this day they have no idea and I don't either for that matter how I made it this far. They have no idea how many times I sneeked out in the middle of the night to get myself to the ER, barly be able to drive myself.
To this day they have no idea how many times I cryied and just wanted to be helded. To this day they have no idea how I walk in fear almost everyday - even tho I have learned to embrass life and love it to it fullest in the best way that I can - always smiling and thanking God that I have yet another day under my belt.
I eventually divorced my now ex- his family and mine....except for my children - I smile more often and love more deeply and most of all accept that I am ill - live my good days as good days and my bad as bad.
To those that can not afford treatment and or work....there is always charity care...most states have it ...most hospitals can not refuse you to apply...and if there is no money then there is nothing owed....always remember were there is will there is way!
But most of all remember the LYME family that we all gained simply from being in the same boat and understanding each other and knowing what we deal with and it helps knowing we are not alone !
Much love to everyone and Hoping everyone has had a wonderful Thanksgiving day. Posts: 374 | From NJ | Registered: Aug 2006
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bettyg
Unregistered
posted
Wow, what wonderful presence here for Thanksgiving!
Lymedad, you've had me crying too! You are SO BLESSED TO BE ABLE TO WRITE DOWN YOUR EMOTIONS/FEELINGS.
The older generation in 70=100 were NOT raised that way to show love or to even say I love you! My late Dad, gone 5+ years, was that way at 86 when he died.
I was the one to tell him he was dying, and did 3.5 days later. When I told him, he said, "But I don't feel like I'm dying. He thought some more and said, BUT I'VE STILL GOT THE FIGHT LEFT IN ME!"
Then when I talked him into going to our local hospice house which he had NEVER SEEN before, he agreed. But when the hospice lady stated, "you'll NEVER be coming back to the hospital again; is that ok with you?"
He looked at me and said, "that's a hard question to answer; but yes." He was hooked up to so many machines.
They finally moved him at 330 pm vs. the 9 am after hospice was there to approve all this. I drove there meeting the ambulance, and got him set up/unpacked. Hubby/I moved everything from his nursing home room earlier that day.
I told him about the big back yard with grass all around like on the farm; yes, "I'm going to get well enough to push the wheel chair out there." Next evening at 745 pm he died after his 1st grandchild's wedding 3 hrs. earlier!
Lymedad, you are ONE SPECIAL DAD/HUSBAND/friend! That you for offering to write the other dads!
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Print out several of the post from this board concerning peoples horrific experiences (including mine and my sons)and have him read those.
Baring that, private message me and let's talk.Maybe my AlS secondary to Lyme story would have some effect on him. I seriously would talk to him(I know you don't know me), but I have a decent healthcare background so it woudn't be the first family member I've talked to.
From his point of view they are the experts , but we all know the truth.
Take care and good luck. I meant what I said above. If I can help one person not go thru what I've gone thru my year will be complete.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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posted
I see you're in Maryland. There is an ID in New York who is lyme literate. He's also not so expensive.
Not sure yet how much I trust his approach, as we just started working with him, but for us the advantage is that our local doctor (who we need to coordinate insurance issues) wanted us to see specifically an ID.
I'd be happy to pass on the info to you. Please pm me if you're interested.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 25. February 2008, 03:24 AM: Message edited by: OptiMisTick ]
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