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Posted 12/1/2012 2:23 AM (GMT 0)
I am going to vent, I am sick of being sick. I am sick of the pain. I want my life back, I want to feel normal again.

Today the pain is horrible I feel like it could kill me, it is seriously bad. I come on here to read , and I know everyone is suffering, and it's really making me angry.

Why isn't there more research on people like us? I shouldn't be angry , but darn it I am furious today. Why are so many people suffering. It's just horrible.

I am taking my meds, trying to eat better, and I have had it with Lyme.
Posted 12/1/2012 2:51 AM (GMT 0)
I feel the same. I say the same thing, I cry it, I scream it, I want my life back.

THe pain so bad you can cry,

I feel so alone with this disease, why is such a secret, in the mainstream

I feel like god has abandonded me, I use to do reiki, I use to believe in angels

little things here and there, kind people, sign of good stuff, but it is not enough


I surrive, I am not alive, I do my best, I had a hard time paying my phone bill at the place today, my words all mumbled, saying things I did not mean to say, such a wierdo.

I went to health store today for gluten free products, expensive

I am tired of money going down, use to be so set, responsible, etc

I am over this disease too, it is the brain fog that is the worst for me

It is horrible, sci fi stuff

I am alone, I want to date, who will want me, seriously

I could not even play yazhti the other day, something I played when I was a kid
and it was too difficult,

this stuff has damaged my brain

the positive aspects of today, was I bought 99 c flowers and planted them
I have to re do it tomorrow, how I put it looks wierd, maybe I will keep it like that
symoblic to my zig zag brain. The colors are pretty at least. I dont know what else to say

but I can identify with you......

no one else in my world understands, I could scream to eterninty
Posted 12/1/2012 4:05 AM (GMT 0)
I can definitely relate to this topic. I'm usually optimistic. No treatment has ever worked any miracles for me but I always research and try to figure out something else to try. Lately, I have no desire to come up with a new plan. I've been so upset. I feel like Lyme has completely ruined my life.

I've been crying all week. A baby cried because he saw me crying. I know in my mind that sitting around crying is not going to change things but I don't know what else to do. I couldn't even put weight on one of my legs today.
Posted 12/1/2012 4:20 AM (GMT 0)
It is so difficult, you try to stay positive, and take in joy when u can.
I went in christian book store, that was connected to a regular coffee shop, so people all around
and beautiful music was playing, and I bought a few pens for gifts, and I told the woman, i have to leave now, or I will start bawling.

THis disease is serious. I really dont have much money left. I could totally become homeless next year, like it so serious how I am going to manage all of this

I was going to move in with a friend but he had serious flea problem, and I was going to get exterminator etc
but I was not feeling supported enough in my moment of herxing or whatever so he wrote me off.

It was a wierd situation, like if I was not sick, I would never have met him, wnated to talk to him
but then when you are sick, to surrive, you may lower your standards

I loathe this disease, it has almost destroyed me, of who I was, ya know...

it is not a learning experience, cause I cant remember most things anymore
kind like alzhemiers....

we are the people that need to win that big lotto, just to surrive,,,,
praying for money........

anywhoo, good nite friends, hope you sleep well or better than the nite before...
Posted 12/1/2012 5:32 AM (GMT 0)
Ditto what everyone's saying!!!!!
I saw my psychotherapist today and she said it's the first time she's really worried about me. yikes I'm so needing to cry, but don't have the energy to make it happen.

My heart goes out to us all!! Never stop praying. Even when it doesn't seem to help, that's when it helps the most.

Hugs to everyone of us needing it right now. We are not alone!!
Posted 12/1/2012 5:50 AM (GMT 0)
I don't know how to explain it, but the words are in my head , but don't come out of my mouth right. Today was probably the worst for me pain wise, and I thought to myself, I don' t want to do this anymore. Honestly that was so selfish of me , because I have two beautiful kids that depend on me.

I was a different person, I looked different, I was a fighter. My life was never easy , but I never gave up. Now I can barely make it day to day. I can relate to everyone about bills, I had to leave my house beca use of the mold issue, and I moved on borrowed money. I really can't afford all the gluten free stuff, and it's has to be a choice of making sure my kids eat , or I eat 100 percent healthy.


Not just that, but I have been married over 18 years, and I feel bad for my husband. He tries really hard, but It's like I am fighting a never ending better of being sick. I think that I would better be alone than putting anyone through all of this. I guess I am just having a rough time right, now, and I am sure anyone with Lyme is suffering. I wish so much for us all to be cured.

just me
Posted 12/1/2012 4:27 PM (GMT 0)
I'm so glad for this post. It helps me to hear that other people are struggling in the same way even though I'm sorry to hear that that's the case for so many people.

I know a few people with Lyme in my area, but they're different than me because they have pretty much unlimited financial resources. They are able to easily pay for IV abx OOP, buy 100% organic, add 50 supplements in their regimens, see the top Lyme docs, etc.

Then I have other acquaintances who don't even have Lyme and they tell me why don't you go on IV's? Why don't you go to Dr. H.? Why don't you go to a hospital? They can't even imagine what it's like to not have endless financial resources and they know nothing about Lyme and the consequences surrounding it yet they always want to suggest advice like it's an easy fix. It really bugs me.

It seems so unfair sometimes. Some people have everything going for them (families, health, money, etc.) and other have to struggle so much to just get through a day. I absolutely HATE being in this position. I never expected to be dealing with this level of health issues at this point in my life.
Posted 12/1/2012 7:32 PM (GMT 0)
This thread has definitely touched me, as I had struggled with all of this for years and years. The good news is that it will end - we just have to find the treatment that will work for each of us. Since this disease 'plays off' of our own weaknesses and deficiencies, it will take something just a bit different for each person - but it can and does get better!

I'm not sure anyone wants to hear my story again, but I truly thought I would never have the energy to get down on the floor and play with my Grandsons, and yet I do!! Heck I didn't think I was going to survive, as I had organs trying to shut down.

We all need to vent from time to time - this disease is not only hard to live with, it's hard to treat as well! - but we also desperately need to pull ourselves back out of the venting mode as well, so please don't stay for long. Otherwise this worry wort will have more to worry about! You all a like family to me!


Justme
Just a few short paragraphs (LOL!) since you mentioned your hubby. I used to feel the same way - wishing I could come up with a way so that he didn't have to go through all of this along side of me. I couldn't find that way, so we are still side by side, fighting his health conditions now while I'm in treatment. I just couldn't imagine why he would want to stay with me when I was sooo very dysfunctional - I mean I couldn't even communicate with him for a short time!

While I do wish things had been different - I had trouble not taking out my Lyme rage on him occasionally when he would innocently say something that would 'set me off' and of course all the times I was bed-ridden, but all in all, I wouldn't change a thing....more importantly to me, neither would my hubby. Of course it hurt him to see me like that and there was nothing he could do - other than all the chores.

Times like these is where 'the rubber meets the road' in marriages - when one spouse is very ill. I'm sooo happy to say that my marriage made it through the toughest time I have known, and I've not had an easy life. Once on the other side of this, you will be glad that your hubby stuck with you through it all, I'm sure. Just be sure to tell him how much you love him and how much you appreciate him being there!
Posted 12/1/2012 7:36 PM (GMT 0)
I know what you mean, I have had three people in the last week ask me why I can't just go see the Lyme doctor. I had to explain, one its in other state, two If I miss a day's work, I won't be able to pay my rent, and number 3 how am I suppose to pay for it? I can't afford to eat all 100 percent organic, I eat a lot of chicken and veggies, but that is the best I can do.

My insurance is costing me almost 600 a month, for family coverage, and guess what it doesn't cover Lyme. At lease it will cover some of the pills I need. We are doing the best that we can, it's rough. What I think it is , is that people don't understand. They see we are not blind or can walk, and they think we are fine. They don't get how much pain we are in, or that I can't go to a mall and walk around. I get so frustrated with all of it.

My family doctor had to give me some medicine today, because last night I fell at hit my head from a Lyme seizure. They had the nerve to call me and say go back to the specialist, because I am now starting to have seizures. I have had them for months, this is the 3rd medication the doctor has put me on, it's in my file. I told her office I am not going back to the specialist, who sent me back to my doctor in the first place. I explained, again no I do not need more pain medication, Its so very frustrating.

I was thinking I could see a lyme doc in December but I can't afford it , and the next appointment is in February. I notice, that no one wants to talk about the Lyme, it's almost like if they pretend it will go away. Well I can't just pretend it away, I am living with everyday. I can't just fake a smile, and act like I am fine. Honestly if I do 9 times out of 10 its to hold back tears from this horrible disease.

Just me.
Posted 12/1/2012 7:45 PM (GMT 0)
I just have to realize the person I was, I am not anymore. I can't do the things I use to. I feel like I am trapped in my own body. Yesterday I said something I never thought I would. After I fell , my husband was making sure I was okay, and he said well maybe the next treatment will work. I said I know what will work, taking a whole bottle of pills, that will work. No more pain, no more of this craziness.

Right away I realized what I had said, and I knew in my heart I would never do something like that. I was just so frustrated from all of it. I hate to see what it does to my kids, when mom is sick again. I used to be so tough, well not so much anymore. I cry a lot.

The disease will drain you , and take every penny you have. I have always look to the bright side, but with Lyme it's hard to keep doing that.

I am not a person that would just end it, I am just frustrated , and I feel like we with Lyme are being pushed out of the way. It's makes me so angry.

just me
Posted 12/1/2012 8:09 PM (GMT 0)
You are able to describe what I have gone through as well. Although I turned to alternative medicine, we have been down the same road I think! You have described my thoughts so many times! The seizures and not being able to communicate were the most frustrating for me, I think.

When I got angry, the thing I decided I was going to do to try to make a difference in as many lives as possible, was to step up to Moderating here! LOL! I often wonder if I am really doing much, but it's all I can do for now. Living my life and moderating take all of my time, and then some sometimes. When I get more healed I will be starting my own support/education group for those who believe they have Lyme or know someone who has it, and trying to change things here with the local doc's. It'll be a long hard battle, but I'm determined that I can wear those doc's down (at least one or two) to learn about these diseases and how to treat them - or at least to not do more damage!
Posted 12/1/2012 10:35 PM (GMT 0)
I told my husband when I get well, I want to help people with this horrible disease. There is so much support for people with other disease, but for some reason not so much with Lyme. I think I can help one person , that is good enough for me.

You are doing a great job on here, there are so many people on this website that seems like they have lost hope, me included. Sometimes all we need to hear, is a few kind words, and we can start again tomorrow.

When we lose faith , we need to find it in other places, this website does it for me.

Thank you.
Posted 12/1/2012 11:13 PM (GMT 0)
Summer, and Just me, I identify almost completly

Yesterday, I was active, in terms of driving an hour and half each way
went to a few stores, including health food store, errands

and I was tired when I got home of course.
then Today, was is, a horrible day, wanted sugar and salt so bad

have to buy some things tomorrow unless I get a hold of my friend to shop for me

today was the kind of day, that I just wanted god to take me,
finances almost gone, etc. the back of my neck hurts, less and less friends, trapped

I am going to loose everything, stuff in my house to an apt. if I can find one.

anywhoo... I did some pretend online shopping, when you dont really buy it
but you click on nice clothes and jewerely, was a diversion....
Posted 12/1/2012 11:19 PM (GMT 0)
First of all, I can relate to this and I understand where you are all coming from! I am miserable. Plain and simple. I don't think my husband can take much more. I feel bad for my son who is 18 months old and NEEDS me. I'm angry that no one seems to want to help us, we have to "sneak" around and find a doctor that's willing to help (thank goodness for them!!). But as is it isn't shameful enough for all of us to be this sick. I can't think straight and it often causes fights between me and my husband. I can't say what I'm thinking for some reason, and I get frustrated. Then he gets frustrated. Then we start arguing, my frustration turns into rage and I think "who is this person??" This is NOT me. I was always a hard worker, a social "butterfly" (lol) active, healthy, volunteered in my spare time, I was happy, loving, and I cared about life and helping others. I wanted to get out of bed everyday. Now I'm the opposite of all of those things.

Ok enough about my rant.

Now on to my second thought.

Traveler-you are AMAZING for spending your time helping us. I've thought this for so long but keep forgetting to say it (unless I have said it and forgot), you should write a book! You DO help, so much more than you realize! I don't know what I'd do without this group and the support from you and all the other wonderful members. Also, think of all the people that read all of this info but don't comment or get involved in the forum (that used to be me). You're helping all of those people too!!

I'm having a brain lapse, I can't think straight enough right now to complete a thought, but I'll try to finish later. I hope everyone is having a better weekend than I am. LOL
Posted Yesterday 1:35 AM (GMT 0)
Justme, I've had those thoughts too. It gets so difficult sometimes and at times like those I have to consciously stop my thoughts and think to myself "this is the disease (or possibly the medication if you're on antimalarials) talking. It's not me."

Then sometimes I take something like benadryl, valerian or melatonin (in a safe/low dose) and just go to sleep. It gets scary being that depressed sometimes. For me when I get to that point I have to just sleep it off.

It's odd that so many of us are having some kind of flare this weekend. Do you think it could be due to the full moon? I hear that parasites (babesia) tends to flare during full moons.
Posted Yesterday 1:55 AM (GMT 0)
Summer3,

I hope someone has some insight on the full moon and how it can affect us. That's very interesting! The moon is so powerful, it's amazing. I'm going to look into this. If I find anything worthwhile I will report back!

Thank you, this gives me something to do to take my mind off of how incredibly bad I feel right now. I hope everyone starts feeling better soon!
Posted Yesterday 3:16 PM (GMT 0)
Im sick and tired or feeling sick and tired! LoL
And I just started!!!!!!!
Posted Yesterday 3:16 PM (GMT 0)
Im sick and tired or feeling sick and tired! LoL
And I just started!!!!!!!
Posted Yesterday 3:20 PM (GMT 0)
 

  I was wondering about the full moon too months ago, looked online, 

moon and lyme,  something to do with barometric pressure

so something scientifically to it,

 

Posted Yesterday 4:06 PM (GMT 0)
The full moon has a lot to do with how some of us have such flares just before, during and even after each time. I'm not real up on the research on how it affects parasites directly (from what I can tell it makes them more active during this time), but with the barometric pressure, it doesn't matter if it rises or falls - it has a direct impact on the 'water' in our bodies. It will also create a bit of a rise in the inflammation that we have.

It's really quite similar as what it does to the ocean tides - due to the gravitational pull of the moon lining up with the smaller gravitational pull of the sun during 'full' and 'new' moons, it's enough to make the water 'rise' and 'fall' some. It does the same thing to our bodies!

The super storm, Sandy, really did a number on me and I live in Arkansas!! But with the way everything lined up and the full moon right then, I was truly miserable for 3 days! I also experience the same thing with other full moons - some months are worse than others due to what's going on with my treatment.

I hope I haven't just confused everyone even more!! LOL!!
Posted Yesterday 4:11 PM (GMT 0)
Rori and Justme,
Thank you so much for your kind words!! Really, they do mean a lot to me!!! I'm just having a few doubts right now about whether or not it's really worth all the time this forum can take from my life, and I'm going through a rough patch right now with my treatments.

It's really all about helping others find the info that I've already located for me, so it's really helpful to know that you both feel this way! As Justme said, helping just one person from time to time is all I need to keep going! So thank you from the bottom of my heart so very much!! Looks like you all will have to put up with me for a while longer!! smilewinkgrin
Posted Yesterday 5:55 PM (GMT 0)
Hi Traveler,

If you can put up with us,I guess we will just about be able to put up with you!!!!!!!!!!!!!!LOL

Tickled
Posted Yesterday 8:05 PM (GMT 0)
Just about, huh? No problem!! I like you all!!! smilewinkgrin giggle!
Seriously, you all have pretty much become just part of my family!
I come here to whine and cry and to share my successes - all of which no one other than those who have these diseases can understand what I'm battling!

So thank you so much, Tickled!
Posted Yesterday 10:10 PM (GMT 0)
After 17 years of looking for a cause of all my health issues, I got the Bartonella verdict this summer.

On one hand I felt so releaved that I got that confirmation of my illness - I could have huged my doctor. Then I got soooo angry (still am), for all the lost years, at all those doctors just not even listening, not doing any effort at all. Then the treatment... soooooo hard... emotionally... Personally, for me harder than the cancer I had to battle at the age of 16 - probably cause back then I was still young (not that I'm old now, 33), had more energy, was ignorant about being ill.

But this makes it so much harder to carry: the ignorance of people, they just don't care. I don't look ill (well, I do, but they don't even bother to see it), so for them I can't be ill... No difference with the cancer, most of the people just don't care. Sounds harsh, but on the other hand, at the end we all have to do 'it' ourselves.

But that won't take away the 'pain' and the lonelines...

I wish all of you a lot of strenghth, we'll manage, and we're not alone :-)

 

Posted Yesterday 11:26 PM (GMT 0)
Oh yes! Count me in the group that is ready for this to be over. I sometimes wonder if Tx will go on forever. I agree with so many of the things said here. There may be no other disease that illustrates just how broken our medical system is.
*Disease where more of the system seems aligned against patients rather than supporting them. Why is there not more research our there to figure out solutions, do better prevention of chronic lyme and still so much trying to prove Lyme doesn't exist?
*Financial inequities are huge barriers to people trying to get treatment. It breaks my heart to see how hard it is for people to get what they need. Not what one needs when they are very sick.
*People with Lyme are at risk of loosing their jobs and health insurance just when they need it the most. I too pay a ton of money for my insurance and it does not cover my ND or most of my treatment. Changes in my insurance coverage now make it a nightmare to get my labs done as well - makes my blood boil when I think too much about it.

On the upside
*As I approach my one year anniversary with my Tx, I am much better than I was this winter and am grateful for that and thankful to have found my ND who is helping me heal. I think that the work I did to support my mind and spirit made a huge difference as well as getting my thyroid back where it should be. And finally finding a Tx regimen that I could tolerate and would work for me. (Very sensitive system!) I'm hoping I get my brain back sometime soon.
*Agree that Traveler and others on this forum are an important support.
*I've also found the blog community really helpful. Can really get to know people's stories in more depth and "meet" some amazing people.
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