posted
First of all, I apologize to everybody because at the moment I'm angry, I'm sad, and.... it's just been a really bad last couple of days.
This Lyme thing has really been a roller-coaster ride for me. The years of misdiagnosis and nondiagnosis which brought me to this point are really frustrating.
Sometimes I can let it go, in sort of a "the past is over and you can't do anything about it" way, but then when these symptoms are now just every day IN MY FACE, I can't help but get really ****ed off at all those wasted years.
I miss what I used to be. I hate that one day I was able to lecture college students in advanced anatomy classes and now this morning I could not recall the word "patio" ("You know, that thing that's over there outside" and pointing).
I sometimes have the thought (and forgive me, I'm not being a smart *** ) that I wish I had cancer. No, I dont want to have cancer....
What I'm saying is I think if I had something like that, there would be people lining up to help me or see how I'm doing, there would be drs saying "I can help you", there would be attention to the problem.
This Lyme disease (and maybe it's just my situation, but it's painful nevertheless) is a disease of people telling me "how good I look",
"get out of the house more"
"stop moping around"
"it's ONLY Lyme, for cryin out loud!"
"is Lyme still around?"
and the most helpful one: "gee, you really have alot of bad luck! I hope it doesn't rub off on me!"
It is a terrible thing to have to be broke, search for help and treatment, and either do it alone or be harrassed for it.
On Saturday, I woke up with a massive headache and stiff neck, and a painful blood-red left eye. I did not go to the ER. I did not want to create more bills as I cannot pay my rent or car payments at the moment. I took some oxycontin that I had on hand.
I had said on a recent post that after so many years of trying to put if off and "hold it together" it looks like I can't do that much longer.
I guess there's a "bottom" in Lyme disease.
So, I found a great list of LLMDs, and my hopes were up that FINALLY SOME DOCTOR will see me and believe me and maybe give me back some semblance of a life.
I was getting HAPPY and HOPEFUL. I tried to get things in my life in order because I was finally going to get help!
And now I'm, back at the bottom again, because I'm scared to death of calling these drs and saying "I have no money. I have no insurance." (all due to this disease of course)
Would they even consider taking me?
Does anyone out there think so?
I really cannot take one more thing not working out. If I'm going to be sick, confused, in pain, and alone, I don't want to go on.
Or is this going to be the last straw?
-------------------- 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
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Oh Missmari,
I feel your pain. I would call the LLMD's and see if they will take you on a payment basis. See if they will work with you. Not a lot take ins. anyways.
This is a disease that truly changes one in so many ways. I hope that things will come together for you and that you can begin a journey to health....it is possible.
Hang in there, Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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It was good that you came on LymeNet and vented....so many of us have these same feelings...
you are soooooooo not alone with them....
I wish I had some wonderful magical words to say to you...but for now all I can say is...that I read your post....I hear you...and I'm thinking of you....
pm me anytime!! mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OUCH! You ARE in a bad spot.
If you want you can join me Saturday on the Chesapeake Bay bridge.
You are certainly invited. Please consider it.
I plan to tie ropes to both my ankles and suspend myself off the edge of the bridge, in the high wind.
I also really hope it is a VERY cold day on Saturday.
It is always much more fun when you hang upside down, swaying in the wind... and you get to freeze too.
A real bonus with wind AND cold.
Oh.. by the way... it isn't a formal event... but wearing a dress while hanging upside down does tend to make you feel even better about yourself.
OBVIOUSLY, I am KIDDING!!!
But to feel so bad to even THINK these things is my point. I've been there... and I am sorry you are there too.
Rather that try the old bridge trick with me...
If you email me and send me this link.. so I remeber WHY you are emailing me.... duh on MY brain...
MAYBE.. and NO promises... we can get you some help. I know how hard it is to even make those calls when you feel so stinky.
I am willing to try and at least get your spirits lifted if nothing else. I can make calls and we'll see what becomes of them.. if anything.
And yes, I do this every now and again for others.. so I don't mind.
Oh.. and the other thing I do when I feel so bad...
I play the Linda Ronstat song... I believe that is who sings it...
"Poor, poor pitiful me".
She talks about laying her head on the railroad track... waiting for the Double E... no not Linda Ronstat... or yes Linda Ronstat?
Anyhow.. I play it over and over and over till I have to laugh.
Also Bill Cosby does a song about a little old man sitting on the curb. If it is available.. you might want to listen to it too.
Then you can always paint all of your toe nails different colors.
OR..
Get a 10 pound sack of potatoes.. take them out one at a time.. name them... introduce yourself to them.. and keep them around the house to talk to.
I find they rarely talk back.. they listen to anything you want to say.. and if you get tired of them you can fry them up and eat them.
But sincerely dear.. don't suffer in silence. Spit it out here... or even write it out then use the finished project to start the wood stove.
Don't bottle up the anger. OK?
Hope this made you laugh.. and if not.. at least you will get an idea of how crazy I am.
posted
Tincup: The potatoes cheered up my day for a laugh!! I might try that myself as I am too far out in space not too.
MissMari: Yes, try to get on a payment plan. People do max out their credit cards. I feel guilty what financial burden this has brought on my family. It is the disease and the medical community not you.
I did go through a long phase of the past and what if and I should have done, and being hard on myself. Be kind to yourself. I am still trying to teach myself that.
I was delivered Christmas gifts that I ordered and told my son to open it up and see what it is? Hello??? to myself. No surprises this year.
Kindly, Barb
Posts: 167 | From USA | Registered: Jul 2008
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posted
No need to apologize for your feelings. I think everyone here has gone through that from time to time if not all the time. I know I often go through periods sadness and anger over what Lyme took away from me. Sometimes I even feel like giving up. I think that is part of the grieving process.
I was just three months away from my Bachelor's Degree and my husband and I were ready to try to have a baby and I was absolutely devastated when I watched my hopes and dreams fading into the background of my Lyme-ridden life. You've come to the right place for understanding.
The hardest part is when hope is limited and like you said, people around you don't get the extent of what's happening to you. The responses you quoted are pretty much a trademark of Lyme Disease unfortunately. For myself and others sometimes obtaining a copy of Under Our Skin and showing it to friends and family is helpful.
I also don't have insurance nor can I afford to see an LLMD right now. Some will offer payment plans or discounts for patients who pay cash. What I would do is just call around and ask lots of questions but I understand if you're too ill to do so.
There is much controversy about conventional versus alternative treatments for Lyme but that is not my focus here. I am just letting you know if you don't already that there are Lymies out there who are getting better on alternative treatments. I have been on the Cowden protocol for approximately 2 years and I have made great strides recently in conjuction with prescription antibiotics.
Everyone has a unique system and different combinations of Lyme and co-infections that may or may not be known. It is important to find what works for each individual. I am still not cured and may have to change what I am doing in the future despite my recent progress. It can be a long process of trial and error.
Also, if you need someone to talk to I am always on the internet at home so PM me or I am on myspace (www.myspace.com/psyche_entranced). I understand that your situation is desparate and I don't mean to sound like what I said is the way to go. I am simply offering options that have worked for me and others I've talked to.
I know it seems impossible at times. Hang in there. Don't forget to take advantage of the wide range of support we can offer you here.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am glad you vented....here.
I wish I had some magic words or advice to make it all better.
I just know that for me, prayer and coming here have kept my head above the water.
Even if the rest of me is sinking.
I had no home (Katrina), no job (unable to work as a Speech Pathologist when you can't remember words ),
Two children with Lyme symptoms and a husband with symptoms as well.
I can relate to your sense of despair and the feelings of being totally overwhelmed.
There will be a doctor out there who will work with you.
There will be a day when you can recall words again.
This I truly believe. My faith in the fact that no matter how bad things have been,
(they've been pretty darn bad) God is always here with me.
Loving me, guiding me and holding my hand along this journey.
Of course all of my dear friends here too have held my hand also.
Couldn't have climbed some of these mountains without them.
Some of our crosses are very heavy to bear.
Sending you prayers of love and support as well as Angels to hold you during this time.
Sending you hugs too.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
been there
i got the following from doctors, family and friends:
just lose weight you need to exercise at least 30 min a day go on the atkins diet you have too much time on your hands drink 2 glasses of wine every day drink more water you need to find a job (and when i did) it became you need to work more or work less you just like to complain stop feeling sorry for yourself just take a walk outside
if only it was that easy i've just given up on expecting/trying to get ppl to understand and i'm ok with that
i'm currently not in treatment since no llmd's take insurance and i can't afford it otherwise. i've spent so much money on treatment and igenex testing out of pocket (and charged on credit cards) that when it finally came down to having a roof over my/my son's head and food or treatment, i had to let go of the latter
it sucks. noone should have to pick health or basic living imo
Posts: 1485 | From USA | Registered: Apr 2004
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