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» LymeNet Flash » Questions and Discussion » Medical Questions » How to cope after decades of illness...

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Author Topic: How to cope after decades of illness...
Told you I was sick
LymeNet Contributor
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How do those of you in this same boat continue to cope?

At the end of my message to sammy in my post about ‘Lasting positive effects from IVIG,” I got a little pathetic with my words.

I found myself writing this:

“Out of my inherent character, and selfishly doing so during this reverent time for many (Holy Week/Easter), I am shamelessly asking for anyone’s thoughts, well wishes, prayers, etc. (no messages needed). Just the thought of others’ positive energy right now could really do my 💚 well.


Many thanks, lymenet warriors,
(Told you...)”

Just curious as to what you all find helpful when you are literally at rock bottom from this hell. 😥

Thanks, friends.
Told you...

[ 03-30-2018, 06:10 PM: Message edited by: Told you I was sick ]

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Bartenderbonnie
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Honestly Told you I was sick

I don't know how people make it through this horrendous disease. But they do make it !

I've been a strong woman all my life, yet this disease has rocked me to the core on multiply occasions.

I instinctively pull up my boot straps and fight.
I have to believe this nightmare will end.

I refuse to watch anything sad that pulls at my heartstrings.
It serves me no purpose. Only comedies or drama's with happy endings. I no longer have contact with toxic or drama causing people. I vent, scream, cry, and will myself to get out of funk. You know when you're in it, get yourself out of it as much as you can.

It always passes. . .

I don't feel guilty about things that really don't matter.

I write myself encouraging notes that I tape to my bathroom mirror.

I have people pray for me. I used to be Protestant, converted to Catholic, now I don't know what I am. My aunt is Jehovah witness and has people at her church praying for me. I will pray for you too.

Knowing that we have each other is probably the most positive therapy to date, with lots of benefits noticed on a daily basis.
We are in this together. We do not judge. We want EVERYONE to succeed ! Love LYMENET ! 💚

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Lyme248
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I'm so sorry you've been sick for so long. The longer you're sick the harder it gets sometimes.

The thing that really helped me was that I really started thinking about God. I had sort of pushed the idea to the side before I was sick.

I always heard stuff about God and Jesus but it always just made me feel afraid. It wasn't until I really started praying and talking to God that I realized what it was all about. I stopped feeling so afraid.

I was just about the lowest I could get at one point I was getting worse and worse and I felt like couldn't do anything about it, and God really helped me.

Sometimes I would just tell God how angry I was about being sick. I like reading the Bible too. Some of the people in the bible were really at the end of their rope too.

A lot of times I still keep feeling like I just can't keep going, but I have hope because I know God has something good planned to come from this eventually.

I also liked to read uplifting books (when I felt good enough to read). When I feel really lousy I like to listen to nice music.

I could attach a couple links for songs if you want.

I will be praying for you.

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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foxy loxy
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I echo what Lyme 248 has just said.

Without God there is no hope of pleasure and healing. Only nothingness and no meaning to life.

With God, you have a friend on your side and suddenly everything in life has a meaning.

So instead of bitterness (which is tempting) I choose to allow these hardships to make me into a better person and reflect the longsuffering of God.

May you find peace in your heart and healing for your body! I care!

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Told you I was sick
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Bartender, Lyme248, foxy...

Thank you all so much for your kind and caring words. It really means a lot to have the input from others who have suffered for so long. I am lucky in that my elderly parents are very devout, and have asked for intercessions from a priest and several nuns.

It is just so daunting when you feel that nothing works to help anymore. I am literally at the mercy of these insidious diseases. As I mentioned, decades with this is unacceptable. No wonder why so many of us are so debilitatingly sick. No wonder so many of us are battling severe neurological disease.

Your hope is very helpful, and ever inspiring.

Lots of love,
Told you...

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HW88
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I am a very religious person, but I have to admit this has rocked me a bit. Why does God allow us to continue to suffer SOO immensely if he truly loves us and wants to heal us?

I'm really not asking for controversy, but I would love others thoughts... maybe it would help answer some of my questions and find peace with God. This may not be the right forum, you can pm me if you want. Sometimes It's really hard to feel his love through all the pain.

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Told you I was sick
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HW88-

Same.

I don’t know. But, the level of suffering from these diseases when it actually causes objective damage to one’s nervous system is just...beyond. I have had a relative pass from ALS, and one who has Parkinson’s. Their suffering is tremendous; but, devastating progressive neurological LD/tbd is a longstanding torture of its own kind.

Thanks so much for sharing your thoughts. Hopefully you and the others who posted here find healing.

Best,
Told you...

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Lymetoo
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Told you .. will be praying for you.

HW .. This is a fallen world. God is at our side to help us through us until his triumphant return!

Happy Easter, everyone!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Told you I was sick
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Lymetoo-

Thank you very much for taking the time to respond. Appreciate your kindness!!!

Take good care,
Told you...

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Silverwolf
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Hi <<<<< Told you'>>>>>,

Adding my prayers too, I don't know any other way than the Lord,and his healing love to get thru this illness!

And I am thankful we can still speak about the Lord, I am so grateful for LymeNet as well!!!

Jus' Silverwolfi here

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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HW88
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thank you lymetoo and silver wolf... I too look forward to His triumphant return... I just wish it were today! [Wink]
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Silverwolf
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Hey <<<<< HW88 >>>>>,

Adding you to my prayers too, I know what you mean, the coming of the Lord would be/will be an awesome thing !!!

I am hopeful of more folks coming to know The Lord Jesus... and it is so hard to be patient...

Sometimes I feel like a pouting 'wolfi' I want my healing now...now... now...

Trying to keep on thru it all, and praying I can help others thru this too.

Jus' Silverwolfi here

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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HW88
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silver wolf, I feel like that too. Being patient for HIS timing is tough sometimes...

Thanks for the love everyone.

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lymenotlite
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Coming from an opposite direction, I was a Buddhist meditator for a long time. I was not a Buddhist but I imbibed a lot of their philosophy, one being essentially that what you don't deal with in this life gets carried into the next.

This lit a fire under me like no other to get well and I was determined to do anything I had to to overcome lyme. The thought of having to deal with lyme in a possible future life was more terrifying to me than my then current horrible situation. I do believe that I am over lyme, if anyone can be completely comfortable saying that, but not all the residual damage is gone. The Buhner protocols were my way out.

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HW88
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Lymenotlite, Thank you for that perspective. It is always good to remember to keep fighting.. as exhausting as it is.

how long did you do Buhner protocol?

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foxy loxy
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I am currently on the Buhner protocol for Babesia. (along with some specific add ons)

It think is has helped my air hunger so far. I have been on it about three and a half months so far.

I think everyone should try it.

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mlg
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Prayer. Ask as many people and as many churches that you can. I hit rock bottom a couple of times. But Jesus Christ heard a lot of people praying. You can find on line prayer offered as well. I just posted some of the things I did on Bruceismom’s post. Burner is also good.
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Lyme248
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I'm thinking God allows us to go though painful things because somehow something good will come out of it somehow.

I know God is love, so he's not trying to do something bad to me on purpose. I also know that God is a lot wiser and smarter than I am, so he must have some kind of plan that I can't see yet or understand now.

Has anyone read Joni by Joni Eareckson Tada?
I thought she has some really good insights on why God makes us suffer.

This is a song that really helped me when I was really feeling discouraged. YouTube He's Always Been Faithful

And another one by the same artist that I just heard and I thought was really good. YouTube Hiding Place

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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HW88
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I haven't read that book. I will have to check it out. I'm reading 'where's God when it hurts' right now. Some interesting insights so far on the blessing of pain... hmm. Still trying to wrap my mind around constant pain being a blessing. hahaha.

I will listen to the songs.

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Phoiph
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1. Know that cure is possible.
2. Never, never, give up; but be willing to give up that which doesn't serve you.
3. Endure one moment at a time.
4. Accept where you are for the moment, but never lose sight of the ultimate goal.
5. Japanese Proverb: "Fall down seven times, and stand up eight."

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Told you I was sick
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Thank you, stephfino, Silverwolf, lymenotlite, mlg and Phoiph (I think I thanked all others up above).

I really appreciate ya’ll taking the time to chime in with your words of hope and advice.

I hope that the road gets easier. It is taking all I have.

Again, thank each and every one of you for your encouragement and care.

Best,
Told you...

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Told you I was sick
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For those who wrote me PM’s the last few days...I will write each of you back individually very soon.

Thanks for sharing light and love.

Told you...

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Gnienay
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Can I be put on prayer list? Yesterday I was so desparate from mental pain that I told God he could have the most precious, cherished thing I have. My son. If not for my son, I would not keep fighting. I guess God knows this. But Im willing to give up anything to be healed or at least have my panic attacks and crying jags gone.. i am alone , my family does not believe i could be like this for so long. None of them has looked in depth at lyme and co infections. I buck up when I can. But pay for it later. Ive lost my identity, my purpose....please ask God for comfort and healing for me. Thanks G.
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Told you I was sick
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Gnienay-

I am so sorry that you are having a difficult time. It’s so sad just how many of us are at the lowest of lows due to severe complications from longstanding tick-borne infections. It was so gracious of others to reach out to me a few weeks back -I still have not been able to thank them personally with private messages,- and I hope that you, too, will feel encouraged here from others in this lovely Group. Just take one second at a time. That is literally all that I can do now as this disease takes over.

Hope for healing to you,
Told you...

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