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My husbands beautiful poem about what I/we go through with Lyme Disease

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Posted 5/25/2009 7:52 PM (GMT -7)
Under My Skin (Lyme)

Alone, deep in this dark, I hide all of my sorrows from you.

I try to cover my pain, but it flows through my veins no matter what I do.

A monster under my skin, a creature in my head...

makes me wonder what I've done wrong and what I've said.

As my heart grows cold, I feel a hundred years old...

it's under my skin forever, from what I'm told.

Makes me feel like I'm gonna die today...

but wouldn't that be nice because the creatures would have to pay.

How could such a short time feel so long?

And how can such a young life, go so wrong?

People see me and hear me and think Im not true to my word...

because with the monster under my skin, they think I'm seriously disturbed.

Always down, always in pain trying so hard to save face...

as I lay here with tears in my eyes, Jesus is my only saving grace.

Torn between Heaven and Hell...

everyone thinks this story is useless to tell.

I've been one hundred times around the sun...

another year goes by and my life feels done.

Everyday, I deal the cards and roll the dice...

Hope, pain pills, and God are my only vice.

Now I spend time thinking of all my mistakes...

As my mind, my heart, my soul and my body aches.

Spend lots of time thinking of what I've done wrong...

While I search for the path back to where I belong.

Too much pride to take the final plane...

but deep inside, it's under my skin and killing me with pain.

It's a sickness that kills your social life that will never mind...

people come and people go, but right now, I just need a friend...

to touch my heart and feel my pain...

just to let me know that I'm not insane.

I kick, I scream, I curse and yell...

it's under my skin and feels like hell.

I know it will get better with time...

But for now, all I have is reason and rhyme.

It's always with me, it's under my skin and in my bed...

As I lie here with a golden, silk haired angels, hand on my head.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Post Edited (CajunGrl) : 5/26/2009 11:06:02 AM (GMT-6)

Posted 5/25/2009 8:18 PM (GMT -7)
You are lucky to have someone to talk to about this. I struggle for someone to talk to about this people who listen to me are waiting to walk away or respond only to quiet me. Its embarrassing. your blessed god bless u both -V
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Posted 5/25/2009 9:20 PM (GMT -7)
A husband who understands what you go through and is able to express himself. CG, you are surely blessed. D
Posted 5/25/2009 10:12 PM (GMT -7)
Thanks guys. When I first started getting sick, it was hard for me to get anyone to believe me. Even my husband doubted me at times. I struggled to make people believe me. My husband and youngest daughter are the only ones that see what I go through and how I've declined. I have also lost friends. I guess I am lucky that someone has stood by me with all the crazy mood swings I go through but I wish I sometimes had a close friend to cry to instead of my poor husband getting the blunt end of everything.

Veronica, I know exactly how you feel with people wanting to walk away and not listen. I've had that done to me a million times over. I just don't understand how people can be so cruel. I have helped so many people.....so many whether it be emotional or financial support and never expected anything in return. But, I at least expect for someone to listen or want to help me when I'm at my worse. My oldest daughter doesn't even offer to help. She's in her own little "me" world and really doesn't care. I had a really close friend(well, I thought she was a friend) drop me like a hot potatoe when I was going through some crazy, emotional stuff. That's the last thing I thought she would do and she still has never asked how I was doing. That was over a year ago and I still get angry and cry over it. So, I know first hand what you and everyone
else have and is still going through. Some people still don't believe me because they only see me on my good days. They don't see me like my husband does when I can barely move or even bend my fingers.

I guess I just wanted everyone here to know that it was not and still isn't easy for me. I posted this to have people read this and say, "This is exactly how I feel and what I go through". I hope I don't upset anyone.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Post Edited (CajunGrl) : 5/25/2009 11:16:30 PM (GMT-6)

Posted 5/26/2009 7:30 AM (GMT -7)
CajunGrl, What a great poem. It should be published somewhere for all to read although I'm sure many would still not understand.

I'm sorry for all you have gone through and can relate to it all. You're very lucky to have your husband but very unfortunate to have this darn disease.

This disease is so isolating and no matter what I go through or how I try to explain, the people in my life (or I should say the people no longer in my life) do not understand or get it on any level whatsoever. I am hurt beyond belief and am finally starting to realize that they must think I am greatly exaggerating. Either that or they really just don't care. To be honest, I'm not sure which one is worse. The only person who shows any genuine concern on a consistent basis and acknowledges how bad things are for me is my ex who checks in with me and drives hours to visit when I allow him to. lol I feel so guilty for dumping on him but I really don't have any family. Before becoming sick I had a great social life and strong support group of lifelong friends who have practically disappeared. It's baffling and very hurtful.

I never could have imagined that the emotional pain would be far worse than the physical.

Your poem sums it all up in a beautiful way.
Posted 5/26/2009 10:16 AM (GMT -7)
Scorpio,

Thank you so much. I don't get why people act the way they do. I think it's disgusting and truly let's me see how people really are. You definately know who your true friends are with this disease. I guess I didn't have any, LOL. The same exact thing has happened to my daddy. He was diagnosed with hepatitis and it attacked his liver. All of his friends dropped him. I thank God that our relationship is good again because now he has someone(me) to complain too. I thank God that I'm strong enough to pick up the phone and give emotional support. At least I still have that!!

I don't know if it's because people just don't care or they just don't know how to deal with a sick person, but I would NEVER in a million years abandon anyone that needs help. Hell, before I got sick, strangers would tell me their life story and problems. I listened and helped if I could. I keep hoping that there is a reason I am going through this. I'm hoping I can help someone one day.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Posted 5/26/2009 12:03 PM (GMT -7)
CanjunGrl, I keep hoping that there is a reason also.
Posted 5/26/2009 12:09 PM (GMT -7)

That is beautiful!  Your husband is a very special person, and you are too!  The thing with family and friends is that nobody really knows what you are going through, even the ones who do care.  Except it sounds like your husband really understands.  Your posts on here are helpful to all of us, and even though we will probably never meet I feel a sort of friendship is happening between all of us on this site.

I think people prefer to be in denial of pain and suffering.  If they don't have to look at it face to face, they can avoid thinking about it.  It doesn't make them bad people.  We are all on our own journey, and they will have their own tests and trials. 

Posted 5/26/2009 12:19 PM (GMT -7)
i know its like why do i listen to peoples problems responsively and they just dont have the same intuition to listen to me. basically they cant help but think you a hypochondriac . At least im not that self indulgent and i believe that is a rot a sickness in itself not to have empathy for others quality of life. it is insanity
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Posted 5/26/2009 5:25 PM (GMT -7)
Beautiful poem although sad as the suffering is so well expressed. My husband is also supportive and kind. Most people do not know what to say or do and feel awkward. Some people don't want to be bothered.
Posted 5/26/2009 8:47 PM (GMT -7)
You have a great hubby, and many lyme friends :) i belive the reson for our friend or former friends is that most folks fear, fear itself. its the unknown they cant handle, and even tho we try to explan it to them they cant grasp it till it hits home unfortently.

i to have the same thing happen to me and my family being many miles away cant grasp it when i talk by phone to them. they did understand when i have knee surgery tho. till 1 yr later i still cant walk well if at all. so now when i call em if they even answer i just chat about the grankids.
   RD

                                                                                                                 

 

still looking for answers

 

Posted 5/26/2009 8:58 PM (GMT -7)
Yes, I'm starting to learn to just keep my mouth shut about this disease and talk about other things. It's funny how people are because as long as you look okay and act like your "old self", it's business as usual and everything is fine.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Posted 5/27/2009 7:29 PM (GMT -7)
Bumping this up for the new people because I feel like it really touches the heart.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Posted 5/28/2009 5:17 AM (GMT -7)
What a wonderful poem. I want to print it out and give it to every doctor I see.... and my husband.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade

06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 

Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg

"Medicare/SSDI theme song" - http://www.youtube.com/watch?v=MgHioCC3yCo&feature=related

"How much more can I take?", song - http://www.youtube.com/watch?v=5gHiR1xeOSs

Posted 5/28/2009 12:45 PM (GMT -7)
Jelaine,

You're more than welcome to print it out if you'd like. I couldn't believe how dead on my husband was about how I feel. It's like he was in my body or something, LOL. I guess he was paying attention, LOL.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Posted 5/29/2009 9:30 AM (GMT -7)
My husband was really moved by the poem......... thank you.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade

06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 

Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg

"Medicare/SSDI theme song" - http://www.youtube.com/watch?v=MgHioCC3yCo&feature=related

"How much more can I take?", song - http://www.youtube.com/watch?v=5gHiR1xeOSs

Posted 5/29/2009 1:13 PM (GMT -7)
You're so welcome!!! It makes me feel good inside when I can help someone else.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

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