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Posted by Clint31 (Member # 16420) on :
 
Might sound like a silly question... but I have no one to talk to about this at all. I am all alone and I'm fighting this but I am just scared. I have this constant feeling of overall non-well being and dread. I'm dizzy a lot of the time. I'm just scared to death and feel like I'm going insane.

I am starting to have doubts whether I'll ever make it out alive. I dont know. I dont mean to be so negative I am just really struggling right now. And I've felt worse then this for sure.... but I just have this overpowering feeling of hopelessness and this was the last place i decided to turn to.
 

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Posted by hcconn22 (Member # 5263) on :
 
Depression is a very common symptom of being ill-- ESPECIALLY from Lyme. Lyme as you know effects your brain and neuropathways.

you are not alone.

Are you taking an antidepressant? If so you may need to look at increasing the dose. Check with your Dr or LLMD.
 

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Posted by psano2 (Member # 11711) on :
 
Are you seeing an LLMD and getting any antibiotics?

This IS a scary illness, especially when it's so new to you like it is. I felt the same way as you before, and even had some moments where I wasn't sure it was worth it any more, but you will get better. It will probably take a lot longer than you'd like. I've been on antibiotics for over 3 yrs now, and I'm still not completely well, although I'm much, much better.

Hang in there.
 

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Posted by METALLlC BLUE (Member # 6628) on :
 
The illness itself messes with your head, causing depression, anxiety, hopelessness, etc. Feeling sick and having all the other symptoms as well magnify that feeling. It is overwhelming and unfortunately it has taken a lot of lives. Suicide rates are high, and suicidal thoughts are even higher. About 1/3rd of patients with this illness consider suicide at some point. That's quite a serious number.

The illness itself can be devastating and of course lead to complications. However, if you have a reason to survive, then you have a reason to fight. If you believe you can defeat this, even in spite of the facts that are currently present, you have a very good chance of making it out alive and getting better. I can tell you that hope, is a big part of surviving this illness.

A lot of patients with this disease won't understand what I'm talking about, because a lot of them aren't at the bottom of the list. They do suffer, but they aren't literally dying like others. I was one of those "bottom" rungers. There is a "spectrum" with this disease. Those who think Chronic Lyme Disease is bull****, even though they themselves had Lyme. They got treated quickly, got well, so they look around at people who are chronically ill and say "Uh, you're just being a baby, it's not that serious."

Then you have the folks in the middle, they've been sick a few months. Some feel like they're dying, some feel miserable but can tolerate it and still work, others are asymptomatic and don't even know they're sick, even though they are well on their way.

The bottom rungers suffer the most. These are the ones who went undiagnosed for 10, 20, 30, 40 years. These are those who survived until their bodies or spirits failed. There have been some who didn't quit, and who - by some sort of fate, chance, destiny, whatever....survived to finally find the right diagnosis. I was in the last category. I just barely made the cut off before death. I was septic, my bowels were bleeding, my brain was degenerating along with my nerves, my heart wasn't working correctly and my immune system was failing. My mental world was riddled with delusions, insanity and an ironic "knowing" that I was trapped inside this faulty mind and body, and could not control most of my function or fate.

This illness nearly took my life on a number of occasions. Two of which were physical, and one which was suicidal. The latter, I chose consciously, to avoid.

I was 17 years old, by this time I had the illness for 8 years. I remember standing in the shower, and I felt this overwhelming exhaustion spiritually. I just didn't have the physical, mental or spiritual strength to go on living the way I had. I had to make a decision. Would I take full control, and end my life to stop the suffering, or, would I fight the illness vehemently until the end, whether I won or lost the battle? I'd been to every doctor you can think of. I exhausted my options until doctors literally were black-balling me -- telling me never to return to their offices, because in their opinions, I was not really sick, that I was either crazy or a hypochondriac seeking attention. By the time they started believing me, I was on my deathbed, but even then, the diagnosis were all incorrect. They pumped me full of steroids, hoping to save my life. Fortunately for me -- or unfortunately -- the steroids did save my life. They decreased the swelling temporarily to allow my body to repair from over 15 years of out of control inflammation. Sadly, those same steroids which saved my life, would cripple me and nearly end my life

Back in that shower --I made my decision based on logic, not faith. My logic was this: If I chose to go on living, it was possible that I may discover the cause of my suffering, and if I did, the possibility of treating it may also exist. Of course the opposite was also true. At this time, I was still undiagnosed. From age nine until age 25, most physicians told me that nothing was wrong with me -- as I said above. About 20 doctors, of the 150 that I'd seen, diagnosed me with various underlying conditions -- secondary diagnoses, or told me they knew something was wrong that was causing all of the symptoms I'd been explaining, but they didn't know how to help me (Fair enough, I respected those individuals) Later, I would call some of them and tell them. Some were shocked and said "Wow, aha!" and some said "Chronic Lyme doesn't exist."

I've discovered that the line between an incorrect diagnosis and a misdiagnosis isn't so simple. Certainly I was depressed, so depression was of course a diagnosis. I was anxious, so I was diagnosed with Anxiety. I couldn't sleep, therefore Insomnia. I couldn't eat and my bowels were inflamed, therefore I had Crohn's Disease. I had cognitive deficits and couldn't focus or remember things, therefore I had ADHD, arthritis, chronic fatigue, and the list goes on and on.

At any rate, getting back to the point once again. I decided that the probability of success in finding an answer lay in my understanding that a "possibility" should be the focus of my intention. In this respect, I "hoped" that because it was possible to recover and find a solution, that I would actively pursue it, until I no longer could.

So I chose to live. I decided that I would rather suffer, and potentially die trying, than to assume that suicide was the best course. If I killed myself, I could have been 2 days away from an answer, and I wouldn't have the opportunity to defeat an obstacle. How foolish would I be then? That's what this illness is. It is a cross bared, an obstacle en route to a future which was uncertain. My life, while difficult, was worth more. If I suffered and lost, I could at least help others along the way as well as devoting myself to a cause of survival. I found meaning in my suffering. It was a challenge, and I love a good challenge. Once again however, it was unfortunately another 8 years of suffering before I actually did find an answer. It has been 6 more years since then, and I'm still only 40% functional on "some" days. That's 39% better then where I was at some points. So, in all my searching, I have achieved what seemed impossible to others. The battle is not over. My rate of learning is accelerating, I know I am closer to a solution.

Another reason I stayed the course of living was this: I also felt it would be unfair to the "future me" to allow the present me at that time, to decide his fate. Think about it like this. Are you the same person you were 10 years ago? If you could go back don't you think it would be a disservice if the younger you made poor decisions knowing they could affect the life of another? (Yourself....in the future).

Sounds complicated, doesn't it? But it's not. You owe it to yourself, to choose, over a span of time which is fair, to decide who you are, and who you choose to be in the next moment. I didn't wake one day and choose life. I knew my head was ****ed up. I knew I wasn't rational. I also knew if I kept processing it, eventually a coherent choice would emerge that was rational. Bits and pieces. Do you quit? Do you give up? Do you end the suffering?

I do not judge people who choose to go either way. Each person's suffering is relative, and there comes a point where even iron can be bent and broken. Human beings aren't unbreakable or infinite.

So, will Lyme Kill you? Maybe. Will you kill you? If you want to live, then you must choose to do it. You must, at all expense, exhaust every single possible options that you can think of and seek out solutions in order to overcome this obstacle. Maybe you'll win, it's possible, right?

If you feel like you're dying, it's because you probably are, even if it's mentally or spiritually. That's the most likely place Lyme gets it's victims, through their spirit. So find meaning if you must. Find support in books, or reach out to people like you've done here. Take risks, study what you can, even if it's hard. Go bankrupt if that's what it takes. Take out loans, run your credit into the ground. Borrow money from anyone willing to give it. Beg strangers if you must. I did....... I've done it all, because I know I'm right, I know it's possible to win even when it seems impossible. By all great thinkers experience, I have reached one conclusion. The impossible just takes a little longer.
 

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Posted by Keebler (Member # 12673) on :
 
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Clint,

I am so sad to read some of your posts and know the pain you convey.

This may be very hard to hear, but if there is any way that - just for now - you can adjust your expectations about life - that may, in fact, SAVE your life.


That has been the hardest part for me. Adjusting hopes and dreams - putting them off - changing them - but NOT letting go of the most important aspect of our hopes and dreams that usually involve being loved, having purpose and interaction with others.

Metallic Blue - and others - have good words.

Remember that you are good. You are strong. In all the ways that truly matter as a human being. And you have a good chance of getting better.

Be sure to tell your LLMD about this, too. She would want to know as there may be some shifts in treatment that would help.

Is your liver support steady? Toxins can really add to what you describe. B-vitamins and Fish Oil can really help, too.

And, the herb Gotu Kola (not a cola) can help lift the mood without over stimulation.

And, magnesium to bowel tolerance - also a great help in detoxifying and lifting depression.


Hugs.


-
 

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Posted by Peedie (Member # 15355) on :
 
You need to hang in there!!!! Listen to the people who are sick just like you. Metallic Blue - God Bless you - you are a breath of pure oxygen to a the hopeless soul.
When you hit bottom - climb your way back to the top any way you can. Do it for yourself - do it for us. FIGHT
What you are feeling now - know - that "this too will pass". You will get to the other side.
Blessings be with You,
Peedie
 

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Posted by groovy2 (Member # 6304) on :
 
Hi Clint

I went threw this completely alone like you
are doing-
In some ways its easier to go this route-

You can not allow yourself to get depressed-
Its Much to hard to bring your self back up
again so just dont go there --

Most if not All of the people here have thought about doing them selves in -
I have thousands of times-

But what I did was set my self a goal to head
for and set a time limit that if I did not make
some progress I would go a head and and check out-

Once I did this I was able to think more positive thoughts and set reasonable goals for myself-

This is a tuff disease and Nothing about it is
easy or quick - but if you work hard at getting
well again and have some Luck on your side-

There is a Good chance that you can come out the
other side of this nightmare and have many years
of good life left --

Take Care--Jay--
 

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Posted by sparkle7 (Member # 10397) on :
 
It's rough but you never know what tomorrow will bring!

Try to get through it as best as you can. I'm not sure what your worst symptoms are but painkillers helped me alot.

Being in constant pain can make you anxious. I'd prefer to treat the pain rather than take anti-depressants. Just my decision...

You aren't alone.
 

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Posted by Clint31 (Member # 16420) on :
 
Thanks to those who left heartfelt replies. There are a few symptoms that are depressing me in particular, these symptoms have me feeling that I am dying or will die tragically young (25) even though my LLMD and others that are definitely wise think otherwise. It is causing me immense amounts of worry and depression at the very least. My mind doesn't operate like a normal person. Here are the symptoms that have me constantly thinking about them:

-Dizziness when walking

-Overall feeling of impending doom or dread

-Heart flutters, skipped beats, palpitations

-*When I'm falling asleep at night, I right when my body starts to fall asleep I get these HORRIFYING, QUICK jolts of intense chest pain right in my heart area that is so intense it brings me out of a sleep state to a half awake state. Now several lymies have said they know what I'm talking about and know what this is. Everytime I have it I'm sure its a heart attack.

-Unpredicatable anxiety (which has improved a lot but still I shouldn't have any). Sometimes I get "froze up" and feel like I might keel over and I begin to worry and then work into a frenzied panic. Sometimes it is brought on by depersonalization.
 

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Posted by tickssuck (Member # 15388) on :
 
Hi Clint,


I'm sorry for your struggles. You're not alone...but WE WILL get through this. I was sick for 3 years prior to diagnosis and have tested positive for EVERY darn co-infection possible.


I hate the heart stuff, same symptoms as you. The dizziness is exhausting. My central nervous system is whacked, my worst symptom of all. I have rolled into the fetal position more than once, believing this all was killing me and sometimes wishing it would.


I think depression plays a role. For me however, some of these thoughts come just from my out of control symptoms and discomfort of an ailing nervous system.


As you already know, it all waxes and wanes. Please stay tough during these terrible lows. Is there someone you can reach out to? I'm glad you're using this site. I hope things get better soon. Sending positive thoughts and prayers your way. TS
 

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Posted by Clint31 (Member # 16420) on :
 
I mean every time my heart has one of those skipped beats, where it just goes spastic.... its the scariest thing I've ever had happen. It had gone away pretty much.... but this week they are back and I can't figure out why.
 

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Posted by troutscout (Member # 3121) on :
 
Clint,

The jolt is from the infection that has entered your nervous system.

What is happening is your Limbic System (Fight or Flight reaction) is affected...when it gives the "relax" signal...the neurotoxins in your nervous system (caused by the infection) short circuit signal and cause you to feel a big "zap".

It hurts...is VERY frightening and is also exhausting.

One of the things I had to do...was re-wire my neuro-pathways by thinking thru a relaxation technique....that allowed the 'shock' to get smaller and smaller.....eventually disappearing.

A good Chiropractor...may also help....however, do NOT go to one that will 'crank' your neck around.

Detox that body....and brain.

I am NOT a Doctor nor a healthe practicioner....

Trout
 

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Posted by djf2005 (Member # 11449) on :
 
clint-

do you have a lyme support group near you that you could attend?

what has helped me tremendously since getting ill (im on the bottom runger metallic blue category)
is making friends locally that are in the same situation i am.

some of my closest friends are people who live naer me w/ lyme now.

if you need a friend of someone to talk to, call me.

484-467-0410

hang in there man. its a long journey. VERY long.

you will make it if you believe

cheers

derek
 

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Posted by James Marschner (Member # 13073) on :
 
Clint!

I feel almost exactly like you!

Heck w/ the physical symptoms...it's the psychological feeling of impending doom taht gets to me. Makes everything seem unbearable.

I have tears in my eyes as I write this.

I've been "cut-off" from my family (Cuz they don't believe Lyme is real.) and friends. I feel very alone.

Try and remember your brain isn't working correctly anymore. These feelings are simply that. Feelings. Not much unlike that of physical ones.

Don't trust your brain anymore. Trust in the people you talk to here on lymenet.com

Collectively, we are strong. draw off that strength until you have enough of your own.

I've been fighting for 2 years now. I want to give up everyday...but I just don't.

I believe that my life is NOT over. YOurs is definitely NOT over.

PLease believe us. There IS a good chance you will COMPLETELY recover.

Clinicians scoff at me when I say I feel like I'm going to die. They say "How?" lyme is not a terminal illness.

This leads me to feel alone, isolated, and suicidal.

Please don't make this mistake. You still have alot to live for!

Besides, you can get temporary relief from some drugs. They may be difficult to come by, but keep going to different Dr's until you get what you need/want.
 

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Posted by James Marschner (Member # 13073) on :
 
Sometimes I get so dizzy...it scares the heck out of me! I think...."what if it doesn't go away? I have to live like this forever?!!!

Don't worry. YOU WON'T.
 

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Posted by James Marschner (Member # 13073) on :
 
Don't put all your faith in anti-depressants though. They take 4 weeks to start working fully, while Benzo's work in 30 minutes.

They didn't do anything for me except add more unpleasant side effects.

I've taken Paxil, Serzone, Celexa, effexor (SSRI's.) PLus anti-psychotics: Zyprexa, remeron, haldol, seroquel, risperdal plus more I can't think of right now....but nothing helped.

Then I tried Xanax and thought it HAD to work, b/c it was th e only thing left....but it worked only about 20%-25%.

vALIUM WORKED ABOUT 50-60%

Klonopin about 10-20%

All higher doses than average patient w/ depression/anxiety prob's.
 

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Posted by ginnyw (Member # 14493) on :
 
Clint, I haven't posted in months because of being on the "bottom rung." Your desparation and cry for help led me to tears. I feel your pain. As I try to write this, I struggle with wording. I feel I've lost it to the point of no return.

My LLMD that I travelled 1800 miles to see says I need to ween off the Vicodin since the pain will be harder to treat in the future. (I was undiag. for 20 years) The chest pain is the worst pain, more unbearable than the many other pains.

Anyway, please hang in there, you've inspired me to go on. I know it has to get better. Thank you.

Metallic Blue - your post was amazing, my tears continued to roll as I read. Thank you.
 

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Posted by Clint31 (Member # 16420) on :
 

quote:

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Originally posted by ginnyw:
Clint, I haven't posted in months because of being on the "bottom rung." Your desparation and cry for help led me to tears. I feel your pain. As I try to write this, I struggle with wording. I feel I've lost it to the point of no return.

My LLMD that I travelled 1800 miles to see says I need to ween off the Vicodin since the pain will be harder to treat in the future. (I was undiag. for 20 years) The chest pain is the worst pain, more unbearable than the many other pains.

Anyway, please hang in there, you've inspired me to go on. I know it has to get better. Thank you.

Metallic Blue - your post was amazing, my tears continued to roll as I read. Thank you.

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The biggest thing I'm holding onto that gives me hope is this:

About 100 or so times in my life, I've had a situation where during it or before I doubted myself. I wondered "can I really do that. can I make it throug that. will I really be capable of that".

I remember thinking it about being able to perform in college baseball--wondering if I was good enough. Passing financial management classes. Certain jobs. Heck, at the time high school seemed intimidating. Buying and owning a house. Etc. etc. etc.

Now I look back at all those things I worried countless hours about. They don't seem like mountains anymore. I look back and I laugh and wonder why I ever wasted precious time worrying--because I would be taken care of all along. Almost like an imaginary hand guarded me through those challenges I was so worried about; or in my belief, the Lord that I have faith in.

Now--this could be different then all those times. It's certainly the toughest challenge. It is the most serious. But the hope I hang onto is that someday I just may be able to look back at this whole situation and chuckle to myself that "I can't believe I actually believed at points I wouldn't get well. I conquered something else in life I didn't think I could." and life will keep rollin along.

That is ALL I have to hang onto right now.
 

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Posted by blinkie (Member # 14470) on :
 
Clint and everyone-

Please, when you feel like this, go read the success stories here on the board.

We will get there too. We have to fight and we can win. I have talked to too many people that have gone from near death to fairly normal functioning to think that I won't get there too.

hang in there!
 

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Posted by Ocean (Member # 3496) on :
 
Hi Clint,
I understand how you feel. I went undiagnosed for 12 years and when I got really sick (for a few years at a time) I had impending doom constantly. Jus that feeling alone destroys ones life, let alone all of the other crazy symtpoms. I had anxiety today, I had to go to a park for my daughter's 5th birthday party. My sister told me I look sick because I'm so thin, that made the anxiety worse (she hasn't seen me since July and she wasn't trying to be mean).

The anxiety is the PITS for me. I've had it since I got sick at 17. The only thing I've done is lots of supplements and a vegan raw food diet with LOTS of carrot juice/barleygrass. Basically the Hallelujah diet. after several months, it takes the anxiety away. My guess is that it improves my immune function so much (plus my body doesn't have to waste as much energy digesting cooked foods) that it can take the Lyme down a notch or 2 and I feel better.

I'm sorry you feel this way, Last night I felt like I was going to die for a few hours and I didn't have an official panic attack, I just felt really crappy and thought that maybe this was going to kill me after all these years.

Take care, I'm actually only about an hour from COlumbus, know of any support groups for Lyme in the area??

take care,
Ocean
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
You will not only get out alive -- you will get better!

Mike and psano2 said it so well. It just will take a little longer than you would like most probably. I had exactly the symptoms you have now, and am so much better after two years of treatment.
 

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Posted by Alv (Member # 15192) on :
 
Hi Clint !

I felt the same way as you are.I never thought I would make it and wake up alive.I was sent home to die.

I was were METALLIC blue is at least for 20 years.

You will get better.At least you know what you are fighting.Metallic blue is right.Knowing what was wrong with me was the key for me to survive.

Even though I was SO LATE STAGE -had ALL COINFECTIONS that were well known....

But I made it and I am better.Just keep fighting .You are in the right place.GOOD bleessed me for finding this forum RIGHT when MY HEART and brain wwere giving up .I ended up chocking to death and could not breath , bells palsy and lost 12 mollars and hearing .


I just came back from shopping right now.I am driving and talking.Ironicly people that sorround me will never understand the SURREAL PAIN I WENT THROUGH and I had no body to help.NONE .They all thought i was making it up.

If it was not for my son probably I would have given up.BUT I KEPT FIGHTING.FINDING what I have was the first step of the releif.You wil lget better.Thanks GOOD with the best findings of the LLMD lately .There is a way out for improvement.YOu are young and you will get better and stronger !

Keep fighting.

Metallic Blue.Good bless your heart.I can not exspress myself any better.You should become a writter.
 

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Posted by Peedie (Member # 15355) on :
 
Hey Clint

I have that too. The dizziness is still there - tho better.
I have days when "impending doom" consumes me. I was never like that before Lyme. So I just try to remember that and not let Lyme take contol of my thoughts.
The heart stuff - yes, yes, yes. I have posted about it before. There were other people having a bad week - right along with me. TG my heart stuff is scarey - but not painful. I would be freaked also, totally understandable. Thing is ----we WILL GET THROUGH THIS!!!! You have to believe that! Hang in there - you are only 25 - you have a future.
Why us huh?
I sense you are a strong person. Hang in there. You have people praying for you.
TC
Peedie

PS - Mike I agree with everybody else - I look forward to a book you've written. I think the title "Metallic Blue" would be perfect. -P
 

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Posted by Geneal (Member # 10375) on :
 
Hi Clint.

So sorry you are in such a bad place right now.

I remember prior to diagnosis, laying in bed at night knowing I was dying.

Waves of terror and the unknown would roll through my body.

From my head to my feet and then over and over again.

I couldn't sleep for fear my children would find me dead in the morning.

While at times I still get the "doomsday" feeling,

I can honestly say that things do get better.

What I am trying to say is that these overwhelming feelings

Of impending demise do fade and go away.

When you are in that very dark tunnel, it is at times

Impossible to see or even believe there is a light at the end of it.

Sending you Angels to wrap their wings around you.

Hold you and comfort you.

To give you strength and peace.

Use our prayers and support like a warm blanket.

Wrap them around you and know you are not alone.

There is life even with Lyme.

Life is and always will be so important.

So when you feel like you can't do this alone anymore remember....

You're not. We are all here for you. Always.

Hugs,

Geneal
 

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Posted by WildCondor (Member # 434) on :
 
Hang in there!
It would have killed you a long time ago if it was going to! Whenever I used to get upset, I would tell myself that, lol. Anyway, keep fighting, it does get better. With aggressive treatment and a good LLMD you will be just fine!
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Keebler:
Clint,

I am so sad to read some of your posts and know the pain you convey.

This may be very hard to hear, but if there is any way that - just for now - you can adjust your expectations about life - that may, in fact, SAVE your life.

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