saying goodbye to my old life and accepting my new fate

It's time for me to make peace with my new life. I've been fighting giving up my independence and health for years. But this is my reality. No amount of stubbornness is going to change it.

I was watching my son play and it dawned on me how big he is. He is going to be 3 years old in February!! Thinking back to the day he was born and reliving that nightmare is something I've been trying to hide from. I didn't want to believe it was real. I hate all of the pictures of hooked up to 600 things and his skin completely black. The monitor showing his heart stopping and restarting... very grim. But it is our history. It really did happen. And now I finally know why. Relief hasn't hit me yet, I'm still just... petrified.

In the months that followed it was just him and I. His dad wasn't there when he was born because of his own poor life choices. And he wasn't there for us after we came home. All those long hours he put into work while we suffered silently left a huge scar on my heart. On my soul maybe even. I felt so abandoned. Not only did my mom die and leave me all alone in the world, I couldn't trust my soul mate to hold my hand through it either.

We lived on a 150 acre ranch. All we would do is walk around the property. For a whole year rain or shine we were outside just the 2 of us and my dogs and the wildlife. It stings a little to remember the loneliness.. but beauty surrounded us and was our blanket of warmth and love when no one else could hear our cries for help. Both of our bodies were barely hanging on. We endured the pain together day in and day out.

My son finally began to feel better after a lot of hard work on my part. Diet changes, medicine, homeopathic stuff...etc. I finally got him to a place where he could be comfortable in his body. And then it's like my strength ran out. I was all used up. I told everyone around me that I was struggling but it was like they couldn't hear me. They just didn't take me seriously or didn't care to try. As my depression grew so did the pain in my body.. I hid it as much as I could. But eventually I couldn't anymore.

And now I'm here. I'm diagnosed. I'm in treatment. I'm on the path to health. I'm finding I have a lot of emotional build up. I'm angry, frustrated, and just plain sad. And at the same time I'm happy that I fought my way through it and got to where I needed to be. In the car en of a specialist for tick borne diseases. The hatred I harbour for these little bugs that have ruined my life as I knew it is immense.. it's ever changing.. they are a part of me and I can't wait to beat them! I can't wait to take my life back!!

Being this physically I'll is taking its toll on my ability to work through the emotional hurdles that have sprung up. I'm confused.. I don't really know how to fix the problem. I don't know if letting it all go is even achieve able. I can't continue to hold on to stuff that affects me negatively. But I can't think straight enough to think my way out of it all!

I miss being alone with my son and cleaning the house and cooking while his dad is at work. I miss feeling capable of doing it all myself. I miss being able to drive! I miss myself. I'm not the same happy person I was once was. I'm bitter and upset and overwhelmed and in terrible pain. I hate it that my son grew this much and I was hardly even "there" if you know what I mean. I've raised him to this point in survival mode. It's just not fair!!

The controversy needs to stop. We need research. We need respect! I know how deeply this has affected my life. And I know a lot of you have been deeply affected as well. It shouldn't take this long to get diagnosed and treated. The real clincher is that this is totally preventable! It's treatable for God's sake!!

What a shame... an effing shame.. money is horrible. Or is it even the money that is to blame? Why is it that this situation even exists?? And what do we do to change it?!

I know there are people out there fighting this. How do we help? Write letters and send them to your states... governor? Senator? President Bush had lyme! Why didn't anything change then? Who is benefitting from our misery?

:( I don't feel very strong. I'll probably look back and come to that conclusion. But it's impossible when I'm stuck in my bed rotting. At least I'm on the right track!

My doctor emailed me this morning to tell me he wants to send me to a pain specialist for my head pain. He said I shouldn't have days that are spent in bed with massive headaches. He acknowledged it wasn't normal and wants to help me. I've never had a doctor that seemed to care about my wellbeing. He said he was determined to get me well and it made tears come to my eyes.. He emails me every 3 or 4 days just to check in. I know he must have 300 patients, maybe more. And he still makes time for all us as individuals. I'm guessing I'm pretty lucky.

Its all down hill from here...you're waging the war against your inner inhabitating colonialists-lol-Hang in there, it'll get better. And help for everyone is on its way with the Lyme Transparency Act. It'll take a while, but eventually the people working against long term infection from Lyme and co's won't have to search and search to find treatment, or pay for it (if they have insurance) when they find it.

You're right Chloe. For every 1 of us battling Lyme and co's there's probably 100 who don't know what's going on in their body, just that they feel awful sometimes and come down with unexplainable health problems from time to time, all the while finding their only relief in various pharmaceuticals. So, Big Pharma and the Insurance companies are definitely getting richer due to the Lyme Mystery.

P.S.-Pharma doesn't make the profits off antibiotics like they do with other drugs, AND the antibiotics are a means to an END, if people don't know they have Lyme and co's, or they can't get the proper treatment, they'll end up with a LIFETIME of Pharmaceuticals.

Well... that makes a ton of sense!! I'm going to have look up the lyme act thing.

"Tick-Borne Disease Research Accountability and Transparency Act" (AKA Lyme Transparency Act) will set up an investigative

committee and a well rounded research group, including 7 representatives from the government agencies, and 7 representatives from the public, such as

(i)Physicians and other medical providers with experience in diagnosing and treating Lyme disease and other tick-borne diseases.

(ii)Scientists or researchers with expertise.

(iii)Patients and their family members.

(iv)Nonprofit organizations that advocate for patients with respect to Lyme disease and other tick-borne diseases.

(v)Other individuals whose expertise is determined by the Secretary to be beneficial to the functioning of the Working Group.

It also states:

"The Working Group shall—

(1)not later than 24 months after the date of enactment of this part, and every 24 months thereafter, develop or update a summary of—

(A)ongoing Lyme disease and other tick-borne disease research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness, intervention, and access to services and supports for individuals with Lyme disease or other tick-borne diseases;"

and

"Not later than 3 years after the date of enactment of this section, and every 5 years thereafter, the Secretary shall submit to the Congress a strategic plan, informed by the most recent summary under

section 399OO–1(b)(1), for the conduct and support of Lyme disease and tick-borne disease research, including—

(1)proposed budgetary requirements;

(2)a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections;

(3)a plan for improving diagnosis, treatment, and prevention;

(4)appropriate benchmarks to measure progress on achieving the improvements described in paragraphs (2) and (3); and

(5)a plan to disseminate each summary under section 399OO–1(b)(1) and other relevant information developed by the Working Group to the public, including health care providers, public health departments, and other relevant medical groups."

This already passed in the House. It would be a great stride for us Lymies to see this thing pass the Senate. It was brought about by a Republican from New York, but has bi-partisan support.

IHL, the strongest metal on earth needs to be put to the fire, heated , hammered to remove the slag, then cooled, the process is then repeated many, many times. You are like this strong metal. As painful as it has been to endure what no human being should endure, each event makes you stronger and sharper.

Weak are those who have no knowledge of pain or suffering for they have not lived.

The fact that you have made peace with yourself and accepted your present reality is the best thing that you can do for yourself and your child for this will forge a path to not only recovery but for a stronger spirit.

If your baby has endured this much suffering even while just a few hours old, then surely he has the same strong spirit that you have. When you feel weak, hug that little bundle of joy and recharge your batteries. He will thank you for it, for there is no stronger bond than that of a mother and child.

And as for the politics and greed on this world... you ain't got time for that! first get yourself and your son better and then worry about what others are doing.

I know it hurts to see how inconsiderate and blind our policy makers and government agencies are that were put in place to protect us and make us well. Their time will come for them to pay for the damage that they cause. For now, heal yourself as best as you can so that when ready, you can kick some major butt!

I can't thank you all enough for enlightening me. The lies definitely invoke a healthy amount of anger in me! I feel like I have every right to be angry. This blows.

So much life wasted. This is supposed to be the time in my life to make memories having adventures and have more kids. I feel like I've been robbed! My son will be at least 5 years older than any of his siblings.. probably more. Maybe he will be an only child because of this.

I feel like my fiance resents me for turning our lives upside down. He isn't happy. I'm not happy either. He wants more kids but doesn't want to do any of the work. I can't have another sick kid, and I don't even have the energy for the one I have now. I wish he would work on accepting our new lives. I feel like that's what is making it hard for me to move on. He is stuck in denial or.... just plain ignorance and so I'm kind of stuck here too. I think I'm going to talk to him. If I ever get the chance.

Do your family members hate hearing about it? Mine avoid it at all costs. Whether it's because it's too painful for them or what it really isolates me. I have to pretend I'm feeling well when I'm not to make them happy. And it's exhausting. And then I end up so tired and sick I can't get out of bed for 5 days to get a glass of water even. I go without food and showering because I don't want to ask them for help watching my son or making me a snack. They like to pretend that none of this real. I'll ask my fiance if I have a rash somewhere and he will say no and then I go look and I'm spotted like a cheetah! And then I re show him and he says it's not that bad.. When it looks and feels terrible.

Maybe it's not as bad. But at my last appointment with the doctor he said how much better face looked. He said he was worried because last time I was in it was incredibly swollen and my eyes and cheeks were black and blue. He even wrote it in my chart! I could see it too, yet my fiance denied it's existence. What is this weirdness??!! He tries to be supportive but denying me like that makes me feel.... fake. Like I'm fake to him, like I'm just not really going through this.

Wow its really pouring out of me today! Ugh.. been carrying a lot of baggage. Nice to be rid of it :)

It's funny how we do that to ourselves. Completely oblivious! It must be the disease..

And why do we call this a disease if it's an infection?

Louise—
I had not considered that perspective of the "antibiotics crisis." VERY thoughtful logic—thanks. I have an aunt who rejects the notion I have "lyme" or is against the abx treatment—not sure which but I suspect maybe both.

And I, too, was concerned about what happens down the road from long-term antibiotics. I decided that since this is the best treatment (for me, right now, for lyme) available to me that I will pursue it and will worry about "down the road" when I get to that neighborhood. I sincerely hope that by then, we have made progress in changing the climate of this controversial disease and more questions are answered.

-p

chloe—
Not sure if your post was to me or the original poster?

for me, I tried herbs for lyme for awhile and it wasn't effective at high doses. However, the herbs I took for Bart and Babs were effective. So that's shy I'm on a hybrid treatment plan - abx for lyme, herbs for the other. While I preferred herbs over anything else, it was no longer an option for me at least at this time and the decision to go with abx had very little to do with how much research I did or didn't do or what the LLMD preferred. Treatment needs to be customized for individual circumstances.

-p

I am so sorry for your struggles. I just heard a podcast http://bit.ly/1xJQ3JO today by Susie Larson who has lyme disease. Her perspective is so unique. It seems her struggles are similar to yours. You are doing good, appreciating your sweet son, letting go of the past. Hugs friend.