I am in the pit of my illness. I have had misdiagnosed Lyme for 13 years, and was diagnosed in October. I started treatment with LLMD in Oct, and my treatment is very aggressive. I felt so much better before I started treating, as I am sure so many of you know.
I have a hubby, 13 year old, and a 3 year old. Things are really hard right now. It is getting harder to find strength, even harder to find happiness. I want to be ok with all this. I know this is my life, and I want to love my life. But I don't.
I am wondering from those of you already on the other side of things, how do you find your strength? Where do you look for happiness, or faith? I am not a religious person, but i am considering finding a church.
I just feel like a shell of the person I used to be. I have kids and I want to give them more than I can right now. I used to be so full of life, so happy. Its hard, you know? What do you do to have fulfillment? Or to get through the day? I am open to all ideas. I just want my life back.
Posted by momindeep (Member # 7618) on :
So,so sorry for your struggles. The only thing that got/gets me through eleven years of my daughter's illness is the Lord and that is the truth of the matter.
If you don't know Him, there is a God Thought thread on here daily, there is some solid insight into who He is and what it all means.
It can be very difficult to find strength and joy in the midst of so much trouble, but it is possible...it can be done, but it would be much easier if you did not have to do it by yourself...finding a church might help you a lot...there can be support there.
Sue
Posted by Lauralyme (Member # 15021) on :
Do you have a hobby that you are passionate about but unable to do now? Some strong interest in a cause? Imagine your self doing this activity that you used to enjoy alot. And soon you will be.
When I was really down I used to think of people that I really idolise. Diane Fossey and Richard Leaky. People putting their lives on the line to protect defenseless animals.Their passion came before themselves.
I just try to look to people who have accomplished heroic acts.....all stemming from a driving passion. I try to imagine the attitude they would adopt if they were fighting LD.
I will say that 3 or 4 years from now you won't even be able to remember the pain you are feeling now. The brain has a magical way of forgetting pain.
Posted by Dekrator48 (Member # 18239) on :
searching,
I understand how difficult this illness is.
All of my strength comes from God.
Without Him, I would be just pain and suffering.
He gives me hope when it feels like there is none.
Here is a prayer for you:
Lord, please lift up searching4truth and give her the hope and strength that she needs.
Please fill her heart with joy in knowing that you are the God of all hope.
Lord, I pray that you will sustain her during these trials and grant her peace and healing.
I pray this in the name of the Father, and of the Son, and of the Holy Spirit. Amen
I urge you to follow your instincts about finding a church.
Feel free to join us on the God Thought thread here where we support each other through faith and hope.
I am also including a link to Joyce Meyer's articles that can be very helpful. They cover many topics, so you can read through the list...
I agree with momindeep and Dekrator48 . The Lord has been my strong tower through this. I too have a 14 year old daughter and a 6 year old daughter. Being a Mom is tough enough for us. Having this illness makes it seem impossible but, our God is stronger than this. Give it to Him. He will give you your joy back.
Trust in our creator, he has big plans for us and this is just a small part of the picture. He will lift you up if you let go. Get into a church, go every week. Pray, pray & pray. Listen to uplifting music. I just went back to work after being so sick since September.
Is it easy? No, but I know my strength comes from God. It seems those of us who get well, have a very strong relationship with God. I agree with Dekrator48 in prayer for you. There are golden nuggets on God thought to encourage and inspire you through this. Here is a prayer for you:
Lord, please lift up searching4truth and give her the hope and strength that she needs.
Please fill her heart with joy in knowing that you are the God of all hope.
Lord, I pray that you will sustain her during these trials and grant her peace and healing.
I pray this in the name of the Father, and of the Son, and of the Holy Spirit. Amen
BTW I love Joyce Meyers and am reading her book "Power thoughts" It is amazing!
Posted by Dekrator48 (Member # 18239) on :
I wanted to pass along some of the inspirational music that helps me...
I find strength in myself, sometimes "God" -- or at least my version in the form of a higher power. I usually find that to be too esoteric though. No actual power is granting me wishes other than my constant bull-like willingness to believe that the statistical probability of finding a solution lay in knowing that if I try to find a solution, then I likely will compared to if I don't try.
Sometimes though, I do find "spiritual" strengths, such as how I feel when I hear a song or another person -- but...maybe that's just transferred role modeling, which is typically normal in human beings. If we see someone else do something a certain way and they get favorable results, we then attempt to behave exactly in the same way, and think in the same way if possible.
Posted by Robin123 (Member # 9197) on :
I find strength in all my many interests and knowing that I lived a full life before I got Lymed.
I also have friends, family and a very interesting place I live in.
I find strength in also looking at nonLyme experience because that's out there for everyone too.
But, qualifying that, since I know more what's going on now for that nonLymed population, I actually find strength in knowing that I can be very useful to others
in helping them to protect themselves, their pets and environment. That my purpose is greater than my own life at this point. I feel sad, and good about it, at the same time.
Back to you, Searching - think through your life about what you have enjoyed the most, and try to start putting some of that back in your life,
in whatever modified form it would take. Generally reduced, smaller, but present in some way. That's how I reengage in my interests.
Posted by Lymetoo (Member # 743) on :
Definitely from my Lord and Savior, Jesus Christ. Without Him I would be nothing.
I don't see how others can make it without faith. It would be just too overwhelming.
Organized religion is a stressor for me - overwhelming like you say.
I went to a Catholic school as a kid. I didn't like the nuns. I don't like church.
I do love the churches in Italy/Spain, but that's different. I like getting lost in the art and architecture - not something you see in the United States.
That's not to say I'm not spiritual. I believe in various type of energy forces. I also run into incredible coincidences where I meet incredible people. This strengthens me. Some of my stories are so strange, people don't believe it. I also feel that I have an above average sense of intuition.
But in terms of God or finding a higher power - that has never been an interest of mine. I don't know, and it doesn't bother me not to know. In fact, it's my belief that there are things we will never know. It's my belief that when we think we know, we close our mind to other possibilities, and we end up seeing less. I see this all the time (note: I am not just talking about religion).
I don't see how others can make it without faith either. But faith and Jesus/God are completely different things in my book.
I don't mean to offend anyone. My doctor is actually a very religious type, and I have no problem with it. More importantly, he is a good person, and a good doctor, and that's what matters to me.
Different strokes for different folks.
Posted by Dekrator48 (Member # 18239) on :
Hambone,
I tried to find the "Believing God" Bible study on the Living Proof Ministries site, but can't find it....can you help please?
I clicked on "Bible Study Bulletin Board" , then clicked on the "Workbook" dropdown menu...then I chose "Believing God"...but the results are a list of dates and places where this is being presented.
I also tried choosing "Believing God-Internet Study" but it said "no results found".
I must be looking in the wrong place. Where do I find the "Believing God" Bible study that I can watch?
Posted by MorningSong (Member # 19989) on :
Dear Searching4truth,
My heart goes out to you. For me, I find strength in my relationship with a loving God and my Savior Jesus Christ.
My strength comes from learning and focusing on who He is in the Bible, and knowing who I am to Him. Examples:
He is gracious at the sound of my cry, when He hears it He will answer.
He quiets me with His lovingkindness.
He brings health and healing and an abundance of peace and truth.
Knowing who God and Jesus are, and that He loves and cares for me, that He is with me and is helping me gives me strength. Having a relationship with Jesus and believing He will see me through.
Below is a song that has really encouraged my heart. It is a song about the love of God. It was written because a member of his family had a health issue. The songs words talk about how our heart can find rest, hope, and peace in a God whose love endures forever. May it be an encouragement to you as you search for truth:
MorningSong
Posted by lyme in Putnam (Member # 11561) on :
I have a 15 year old and husband. I had a full life that I adored, actually reality life, not the Donna reed type, but it was mine. Either the disease or stress from the disease I feel has stripped me from myself and identity. I'm going through this for years. I do treatment and I feel that god knows my heart and soul now, even though I feel I don't. Keep goin. It's tough, sometimesvas loved as you are, you feel so alone. Trust that god knows the real you, even though you're the shell of what you were. I miss my life, in a scary place, but have to accept it now. Has driven me to the brink, but I just keep doing what I usually do and hope the spark that made my personality and connections come back stronger. God bless.
Posted by Hambone (Member # 29535) on :
quote:Originally posted by Dekrator48: Hambone,
I tried to find the "Believing God" Bible study on the Living Proof Ministries site, but can't find it....can you help please?
When I first got sick and thought I was seriously going to die, a friend I worked with 17 years ago came to my home and we did this bible study together. I was sooooooo incredibly sick, but I still did it. It was good for my soul and has helped me make it through some deep dark days.
If you can't afford the $23.95 for the 10 video on-line study, you can email Living Proof Ministries and tell them your situation and desire to know God better. They have a special scholarship fund for women who have financial hardship ( not saying you do, but I know we spend most of our money trying to get better ). It's called the Siesta Scholarship Fund, and donations are made by women, for women, under circumstances like these. They may pay the cost for you for. It's what the scholarship is for ( Beth Moore stuff ). I cannot imagine them hearing your story and saying tough tooties. They would want you to have it.
Posted by kday (Member # 22234) on :
Sorry about my unnecessarily long post earlier.
What strengthens me is recognizing coincidences (and how neat they are), and holding a belief that "Everything happens for a reason."
I may not be well enough right now to pursue it, but I now have a much better idea of what I want to do with my life and career because of this illness.
It appeared that I was a 22 year old living a low stress life. Even though I worked 3 jobs (2 were seasonal), I honestly spent more time doing outdoor recreational activities than work. Not that I think this is or was bad, but in reality, I was lost in life.
I'm 2 years older, and while life can seem much less ideal than before (living at my parents house now), I think this experience gave me a sense of direction that I wouldn't have seen otherwise. I have gifts that I didn't know I had.
Posted by Dekrator48 (Member # 18239) on :
Thanks for the correct website and info Hambone!!!
Posted by MorningSong (Member # 19989) on :
Dear Searching4truth,
I saw in your post that you were considering church so I thought maybe you believed in God.
Even today can be a new beginning for you. In times during this illness when needing direction and truth, I just got on my knees in prayer, shared with God that I could not do this in my own strength, that I was lost and did not know my way or the truth. I asked for His help that I could not do it on my own, for Him to lead me into truth, and protect me from that was not of truth, and thanked Him in advance.
From there I continued thanking Him for leading me to truth as I took steps to find that truth. He truly cares and hears the heart that is seeking.
Morningsong
Posted by searching4truth (Member # 28481) on :
Wow, thank you all so much for your kind words, and your willingness to share with me. I am going to take some time to listen to all of the music, and to look into the reading.
I was raised in a Christian home, and live so many of the lessons I learned as a child. I do not go to church, and do not buy into the Christ as Savior thing (but fully believe that each person can make their own choices and totally respect all beliefs).
I am reading a book right now about parenting, specifically step-parenting, that was written by 2 Christians. I have always avoided these books in the past, but this one caught my eye. One of the authors is a woman, and i have been so amazed at how she is able to let things go through prayer.
She writes throughout the book, her prayers, and how she asks for patience, strength, wisdom, compassion, and whatever else she needs. And she receives what she needs. It amazes me that because of her faith, she is able to let go. To let go of her pain, her frustration, anger, loneliness, etc. I have not considered going to church before, but if her beliefs allow her this, then I want to learn more about it.
I never knew the meaning of grace. I always thought it meant how you carry yourself. You know, they way you seem to others, as if someone was graceful. But now, I think grace is the ability to turn your struggles to a higher power, and allow yourself to walk without the burden. I am desperate to learn how to do this.
You all have shown me that grace comes from the ability to acknowledge you do not have the strength to do it on your own. But by turning things over, you are able to lift your load. Thank you for helping me see that. I am so impressed and I want to know more.
I found a church, called Unity Church, that teaches the Bible, but acknowledges Jesus as a man, but no more a part of God than you or me. I think this is right up my alley.
I am an artist and clothing designer. I quit my job designing for a large outerwear company to stay at home with my 3 year old. I had just started working again when I the Lyme took over, and I have been too sick to do anything for the last year. I think Lauralyme and Robin123 are totally right... I need to get my creative juices rolling again as well. I am going to try and get some little projects going, and hope I can find myself again.
Thank you for the prayer. I was touched to the point of tears that you would be so kind. Your grace has lifted me up, and made me want to find it for myself. I think I will go to the service this Sunday. If you all get the things you say you do from your faith in ... (God, Jesus, or anything else you might call it), then I want to find it for myself. I NEED to find it for myself. I cannot do this on my own. I am not strong enough.
Thank you from the bottom of my heart...
Posted by linky123 (Member # 19974) on :
I rely on my faith a lot. When the burden gets to be too much, I remember what Jesus Christ did for me on that cross.
To me, grace is the undeserved gift of salvation offered by Jesus to each and every one of us. All He asks is that we believe in Him as Lord and Savior. That is my belief.
We can also offer grace to one another, as you have experienced here on lymenet. I've never seen so many willing to offer help and compassion to those who are suffering.
We all have a 'cross to bear'. This is mine. Everyone has something. We have lyme, but we can find joy in life, and Jesus' amazing grace and mercy makes it possible for me to look to the future with hope.
When my mother passed away, I found this little poem among her things. It means so much to me and I hope it will to you too.
God hath not promised sun without rain, Joy without sorrow, peace without pain. But God hath promised strength for the day, Rest for the laborer, light on the way, Grace for the trials, help from above Unfailing sympathy, undying love.
From "A Diary of Private Prayers" by John Baillie
Best wishes to you and I hope you find comfort in your newly found faith.
[ 01-15-2011, 12:21 AM: Message edited by: linky123 ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by linky123: [QB] I rely on my faith a lot. When the burden gets to be too much, I remember what Jesus Christ did for me on that cross.
To me, grace is the undeserved gift of salvation offered by Jesus to each and every one of us. All He asks is that we believe in Him as Lord and Savior. That is my belief.
Amen to that.
Posted by Dekrator48 (Member # 18239) on :
Double Amen to what linky says above!
There are so many Bible verses that mean so much to me, but this one sums up the incredible gift that the Father, Son and Holy Spirit offer me/us...
John 3:16 (NIV)
16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.
Wow! Imagine that! Eternal life in perfect Heaven where there is no suffering or pain forever and ever! I want that!!
This site contains a "Weekly Wisdom" and is very helpful. In the box on the right side of the page, you can find the past Weekly Wisdoms and the Archive of all of them...
We're all here for you and I am praying for you!!
Posted by phyl6648 (Member # 28522) on :
I don't have any suggestions but I sure can sympathize. At least you have started treatments. I was dx about 3 months ago and still afraid to take the meds. I started during the holidays and was so sick I had to stop to get through the holidays. Thinking I would go back on my abx.. Well, I feel better with the lyme than with abx. I know if I don't start the lyme will get worse but for now I just can't bring myself to take even a small dose of abx.
I am so sorry you have to suffer with this horrible illness. I have read so many pros and cons guess I am still looking for excuses.
Been sick for 11 yrs only dx recently..
My prayers, phyl
Posted by linky123 (Member # 19974) on :
Hi Phyl,
So sorry you are having such a hard time with the treatment. Many do feel worse before feeling better. Maybe a call to your md? If you are having that much trouble tolerating the meds, maybe he could adjust them somehow?
Take care and God bless.
Posted by Robin123 (Member # 9197) on :
Hi - just read this thread again - at least you have a family and they're important too -
If you need pain alleviation, that's important too - anything to take down discomfort can be a big help in lifting our mood.
You say you're an artist and clothing designer - how about reengaging in this in a small way, just to be involved with what you can do?
I find it helps alot to focus on something else besides me, like my activities and the people I'm doing them with. Puts back some life in my life. Even if I'm not feeling well, I feel like I did and do things I want to be doing.
Posted by searching4truth (Member # 28481) on :
phyl6648, It seems like you and I have a very similar story. Has your doctor tried any of the herbal or natural antibiotics? My doctor started me on Allimed (potent garlic) and Citricidal (grapefruit seed extract) for 2 months before I started antibiotics. I only started abx a couple of weeks ago.
My body was way too weak to start abx right away. I had been on high doses of immunosuppressive drugs for the 6 months prior my Lyme diagnosis. These 2 natural remedies eased my body into the abx. It is an option, ask your doctor about it. I know it is a hard fight to kill of the lil' buggers, but I also know that we are not supposed to feel like death when we start treatment. If it is that intense, it is not the right treatment for you. There are many ways to go.
I am going to start my craft again. I have lots of ideas, but no energy to get anything going. But i guess the ideas are a big start. I also have not been able to read for the last couple of months, as my eyes are changed. I don't know if it is the Lyme or the pain management, but I cannot read a book (I LOVE to read). I got a Nook for xmas, and I can change the size of the text and adjust the brightness/contrast, and I am reading again!
I also play the violin, but have not picked up my instrument in almost a year. Maybe I will go dust the old thing off.
Thank you for all the support and prayers. I have so much to be thankful for, and I do give thanks everyday. I am not stuck in a pity party, and I have come to accept the role of my illness in my life. I am at the point of coming up with a new understanding of "normal" for me and my family. I just want to do more than make it through the day. I want to be satisfied with my life, even if it is only once in a while that I feel such satisfaction.
I am so amazed at how strong and courageous you all are. We are all warriors, and this disease is ours to fight. But by supporting each other, it is amazing at how much easier it becomes. Thank you all for such support!
Posted by linky123 (Member # 19974) on :
No pity party here, we all need support at times.
My daughter and son play piano; my son plays guitar as well. Their music has given us much joy through difficult times. Hope your violin and crafts will fill a void for you.
Posted by Lymetoo (Member # 743) on :
Searching... are you aware of the Etsy site? You can begin your own shop there and sell your handmade items. I have an Etsy account myself!
It's a little hard to get set up (at least I thought so.. someone helped me, thank goodness!) .. but easy once you get it going.
Something for you to look forward to as you get well!
www.etsy.com Posted by searching4truth (Member # 28481) on :
Lymetoo, Yes, I have been selling on Etsy for 1 1/2 years. The problem is that I can't seem to get anything made. I have a shop, but it is currently empty. I keep telling myself - baby steps. Right now I have all the inspiration and ideas in my head. Someday I will feel well enough to actually make something. Until then, I will keep thinking and dreaming of the day I can work again! PM me your Etsy shopname. I'd love to check it out!
Posted by sickntired19 (Member # 21949) on :
I have to say a hearty AMEN to Linky!
I couln't get through this without my Saviour, Jesus Christ! He came to earth in the form of a human so that he could die on the cross for each and every one of our sins. All we have to do to receive that gift of salvation is to have faith and believe that he is our Saviour and to confess our sins.
I pray that God would reveal himself to you and that you would feel his loving arms around you as you walk through this journey! God Bless you!
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