Lyme Disease Support Group

I just wanted to let you know I haven't been posting because I get over 100 emails a day in my regular email and I had about 35 of them here. I got those down to 10, I've been working on them all morning.

I just don't want anyone thinking I'm ignorning you. Every question you have is immportant to me and I WILL get to them all. So please keep them coming, just be patient with me.

I've had a LOT going on lately, my husband told me he wanted a divorce....after he had sex with me...feeling rather used right now.

Thos of you who know me, know that I bend over backwards for everyone I know, and you also know I have NO family or friend support, so I thank God for my lyme friends, it's sad that we are all in a similar boat.

I'm going to copy and paste something I'd written a long time ago, although there are things about my husband in there being supportive, I had to put that in there because I knew he'd see it...., so here it is...I'm not always this positive, but I try to be, I think our minds are . My son is bothering me to play jenga now, so gonna copy;paste this for you. I will get to more emails and threads:

I was diagnosed with late stage chronic lyme disease several years ago. I never thought I'd say I'm grateful for a disabeling disease, but ironically, I am. Here's a short preview of a long ongoing story. Just before my 21st birthday, I came down with what seemed like a severe cold. Bed drenching sweat, sore throat, fever, the problem was, nobody could tell me exactly what was wrong. The best answer I got was "a mutated strain of mono". So I recovered from that, not thinking much of it. I go on to get married and have children, thinking I would have a "normal" life. My pregnancies were anything but normal. But again, no doctor could give me any answers. I got everything from lupus, scleroderma, RA, to fibromyalgia (all typical misdiagnoses by the way for the root CAUSE being lyme disease).

My husband and I spent hundreds of hours researching what could possibly be wrong with me. Why that in my 20's , the prime of my life, was I unable to preform simple tasks. Lyme disease came up, and I KNEW in my heart instantly, that's what was going on. But the lack of knowledge, or just people just being plain ignorant has been the foundation of my journey.

When I brought up lyme disease to my mainstream doctor, he basically laughed at me, told me how hard it is to get lyme disease, and how easy it is to "cure". But I knew in my heart this was the problem. I am even one of the few who remember a tick bite. (Small tidbit of good to know info, it's not just ticks, but fleas, mosquitos, dust mites, possibly even sex). So off we went, behind my doctor who so proudly had me diagnosed with fibro, lupus, RA, and scleroderma (none of which I had a postive test for either), to make monthly trips out of state to see a lyme disease specialist.

With over 60 symptoms raging in my body, even the smallest task was like moving a mountain. The treatment is often times worse than the disease. Everything from unexplainable, excruciating pain radiating through my entire body, to partial amnesia, and even throwing up "every day for nearly 4 years. All this while trying very hard to raise my two young children and be a wife to my husband.

I would spend hours a day on the internet, trying to find answers, or the next medicine or supplement to try. I was on all kinds of online support groups. Which, while aren't always so supportive, I am so grateful for. I made it my mission to help others in my shoes. I studied everything I could get my hands on about lyme, and treatments, and effects. What I didn't expect to find were some of the most amazing people I have ever known in my life, and I am so grateful for each of them.

On one "volatile" "support" site, I met a woman, who instantly became my best friend and soul sister. From the first time we talked, we had a connection that one is lucky to have even once in their lives. We can spend hours on the phone, talking about anything from lyme to God. In fact, it's because of her that I have the relationship I do with God now. We truely believe He brought us together. She would minister to me, and I was hungry for it. I got my head wrapped around the love of God so clearly, even though it seemed as though my world was falling apart. He showed me that it wasn't, and that in fact, this is all a blessing in disguise.

I have several increadibly close friends with lyme disease, spread over the entire world. It's amazing how one little bug bite can create such chaos in people's lives. I have heard such heartbreaking stories. And yet, I find that most of these people have a heart with so much more to give. I am so grateful for my lyme friends.

And there is my husband, who has stuck by my side thru it all. You might think, well "in sickness and in health" right. Those words are said easy enough on your wedding day. But nobody is expecting it to happen so fast. You might be thinking "yeah we will grow old together, and go thru the normal stuff". You're not expecting the first years of your marriage to be filled with doctors, surgeries (I've had 7 to date), pills, etc. In fact, so many of my lyme friends are often left alone, abandoned by their spouses, families and friends. You see, we "look" normal on the outside. And because there is so much faulty information out there about lyme, because testing is so unreliable, because we become hyper aware of what is going on in our bodies, because you can't even imagine some of the stuff that goes on, we are often made to feel that it's all in our heads, or if we just put our mind to something eles it will all be ok. Well, truth be told, even at my sickest, I was still the one people would depend on, I'd be the one to get the phone call "i'm tired can you pick up so and so from school?" Even though I hadn't slept in days, and puking into a plastic bag in my car waiting to pick up my own kids, I did put my mind to other things, I made it a point to keep busy with other things, so as to not dwell on what was going on inside my body. But even the best intentions can't make it just go away. I feel lucky that my husband has stood by my side, even though there is no way for him to really know how I feel minute to minute, how daily I'm fighting for my life because if I stop I know it will end. I'm blessed to have him.

Another blessing thru this hellish nightmare, are my two beautiful children. They have seen their mom go thru some things their young eyes should never have to see. Something you wouldn't think they could even comprehend. But amazingly, this experience has helped to mold them into two of the most compassionate caring little souls I have ever known, and for that I'm grateful. Even though mommy is sick, we still focus on other people, raising money for a little boy with cancer who otherwise wouldn't have had a Christmas, or delivering meals on wheels. I always want them to know the joy of a heart that cares about others. And they do.

Most of my friends and family try to understand what I'm living with. But this is something that unless you have it, there's just no comprehending. They have supportivly stood by and watch me endure failing treatment after failing treatment. My wonderful mother has been here before each of my surgeries to make sure my mind was at ease about my kids. She would be the one to get them to and from school while we were off in the next state seeing my lyme doctor. I think most of the people in my life don't view me as "ill", as I don't look sick, don't act sick. I push thru it all and use so much energy pretending to be well, if for me or them, i do not know. But all in all, despite the few in my life who lack compassion, I am surrounded by supportive people, and that makes all the difference.

So you see, I will get into some of the gruelling details of treatments and symptoms and side effects another time. But even thru it all, I have learned to look at things with a different heart. Life is so short, sometimes healthy people forget that, and while they are out enjoying their lives, they actually are missing a lot in their life. And thru it all, given a second chance, I don't think I would change a thing. You see, I believe everything we endure and go thru is shaping us into the creatures we are supposed to be in God's eyes, and I kinda like who I am. I'm comfortable with me. This has made me a better person if that makes any sense.

Your tidbit about your compassionate children gave me hope. I have a lot of Mother guilt when I'm flaring or herxing and they are watching yet more tv.

I don't even know what to say about your husband. My heart goes out to you. I'm glad you have a mom there for you - that's one thing I sadly miss while going through all of this...no mom to give me a hug and say she understands.

Life is so damned messy sometimes. I'll keep you in my thoughts and prayers.

S

Ron

and this might be too much info here, but my husband gets laid more than any married person I know, he says he does it for me, soI can "feel good'....Ive tried to explain to him that any stimulation to my nervsous system, good or bad is basically hell...so he does it because he wants to get his rocks off. In fact if I simply say "not right this minute, we just put the kids to bed" I end up with a third child, he will sit here and pout!

I will get more into my past later, but for me it's easier to avoid a fight and just give in, so that's whay I do. and its not just the sex. he doesn't defend me to anyone...his lousy mother is always "poor so and so she hs fibro and is in so much pain" but do you think they ever say anything

[ooks like I got to cut this short, "daddy" is giving a power trip,so gona so smooth that over....god why don't they get it. I;ve said it a mllion times I'd probably be well if I could have ever been sick, but nobody dares pick up my slack.

blessings to you all tonight.

xoxoo

j

I am sorry to hear about pending divorce. I am very proud of you for your vulnerability and transparency by sharing this personal part of your life. That is quite difficult for those of us who are perfectionists and have that strong gift of Mercy.

I too have gone through a divorce while Lyme and friends have been raging in my body. I strongly believe that it was him who poisoned me in an attempt to take my life for insurance money. Before that, I would have said I had such a supportive husband, he loved me and took such good care of me. I felt so blessed. What pain betrayal causes. Deeper and more painful than anything else I have ever experienced.

I have congenital Lyme and passed it on to my daughter. I did not get diagnosed until age 43 (Nov 2007). I refused to go on disability until I started Blacking out and having severe narcolepsy in Jan2010 (Stubborness). It was a case of God having to hit me over the head with a frying pan and saying, "Hey, stupid..."

But in losing MY ability, He gave me my life. He gave me the ability to live in the moment.

It is no longer that I have a husband, a daughter, a nice house and car....

Now I have joy, peace, and happiness that come from deep within.

God put the dream in my heart when I was only 4 years old for my career and to own my own business, and to have my baby. I am 46 years old and have accomplished all that I set out to accomplish in life. What an incredible GIFT that He has given me! To be able to come up with another list. Over the past 4-5 years, new desires have entered my heart. I have hopes and dreams. This is NOT a bucket list. This is what I want to do when I grow up! Who knew He would give me the chance to get to experience 2 lifetimes of joys. Without pain, how do you know what true joy feels like?!

So I, too, thank God for this illness. That He is using it to make me the person He wants me to be for what ever reason that He has not yet shared with me. What an exciting journey!

God has called you to be a mother. You obviously has given you the gift of Mercy. Do NOT forget to REST. It is SOOOO Biblical. Old and New Testaments. There is a book called "The Rest of God" that is amazing. One of my favorite passages in the Bible is after Jesus fed the crowds with loaves and fish, He told the disciples to let's hop in the boat and go to the other side. He was tired and had not gotten around to praying for everyone. The crowd started coming after them because they wanted more from Him. They hurredly jumped in the boat and took off.

Did you get that...He did NOT take care of everyone OR everything!!!

uh-hum...LEARN TO SAY "NO." When you say "yes" to something, you are saying "no" to you and your children by taking that time away. You are also taking time away from your health. Yes, health demands time: Sleep, rest, appointments, massage, cooking healthy, detox baths, etc.

Then, when they are on the boat (Sounds more like a ship), a big storm came and they were afraid they were going to be swallowed up by the waves and die. They were grumbling that Jesus could sleep. So they woke Him up. He was a bit miffed, and was like, "Guys, why do you have such little faith?" And He spoke to the storm to be calm and it was.

See, they had the power to pray to God to calm the storm and save them. Or as Jesus said, Speak to the storm.

We can give our problems over to God and have the faith that He has it all under control! How awesome is that! I am SOOO talking to myself too. It seems that I give God my problems only to turn around to try to help Him figure out how to take care of them. Hmm...I think He knows a bit more than I do about what the right thing is!

I commend you for the work that you do here, but please know that I am sure that one of the reasons there are multiple Group Leaders is that there are times that you need to slow down.

I will be praying for you. If you want more diercted prayer, feel free to PM me. I do not expect a response, but I do want you and your children to know that you are being prayed for and that God is going to get you through this and you will be stronger on the other side. Broken is a hard state to be in.

I don't know if you guys sing the song in your church that says, "Brokeness, Brokeness is what I long for..." I say that whoever wrote that song has NOT gone through being broken. Yes, that allows God to remold us and make us better, but major OUCH!!!

God is NOT through with you yet. Keep shining for Him!

Goob

~~~Come and have a good cry on our collective shoulder. Who but us could possibly understand and have a clue of how you must feel. Who knows how to feel this hurt like us? Who knows pain better than us? Goob knows who.

~~~People out there in "normal" land may think we here in this Lyme Land may be a bit mellow-dramatic. So be it. WE know how it really is in here. "Ouch!" It is indescriBABLE. But not to us. We HAVE been given the gift(lucky us)of feeling so deeply. How else could we feel it?

~~~We got you Jaime. Gotcha! Cha Cha Cha!

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell

xoxo

j

My thoughts and prayers are with you. Please know how much we all appreciate all that you do for us and understand all the effort and heart you put into this site.

I too am divorced, raising a child on my own (and the soled breadwinner)...but no need to get into that here. Just praying that God keeps you embraced in His love and care -and remember, you are collectively embraced in our love and care here on this site

God Bless and many, many HUGS,

JJ