My head hurts from crying.

i'm with ya!!

i never used to talk about being sick or about anything sick related before unless i had the common cold...

now when i talk to people i try to educate them on lyme and co infections.. and most of them are pretty interested, i think alot of them are just happy they don't have it. but i know my family and g/f are tired of it, i just don't know what to talk about... i just want them to know how i feel, Is that being selfish? i dunno.. i just think they should know, since i'm not normal anymore.. i want them to know why..

I wish i could talk about everyday stuff though... but alot of times when i think about it, before when i would talk about stuff, it was stuff that didn't really mattter in life.. no substance.. Now i'm actually educated on what i have to a certain degree, and can hopefully change someones life if they get bit..

I feel the same way. When you suffer from an illness that some of the time we feel fine and visibly we don't look all that sick it is hard for people to understand. For most, the only thing they know about Lyme is that you get it from a tick...you take medicine..and you're done.

What I think happens to a lot of people who get this disease is not what we were taught about it. We never knew you don't need the rash, we never knew the rashes are atypical most of the time, we never knew that ticks carry other diseases, we never knew all of the symptoms of Lyme, we never knew it can affect our whole bodies, we never knew there was a rift between the two camps of doctors regarding treatment of this disease and more importantly we never knew the doctors that should help us find out what is wrong with us could make us feel like crazy people.

SO... by the time we have walked down that long road to "lymeland" we are beside ourselves. With anger, disbelief, fear, confusion. I mean it is hard enough to have a disease but to have one that most doctors and major hospitals don't recognize is hard to stomach. Especially if you are like me and blessed with a negative test.

As we traveled our road to "lymeland" we have taken our families and friends with us on this journey. So we have all talked until we are blue in the face about everything I mentioned above. I think one thing I have learned through my journey is that most people are not very compassionate. The ones I find the least are usually the ones closest to you. So because of the way they react to us having a bad day, we in turn store a little piece of anger away towards them. We still try to get them to understand by trying to open up about our feelings but the door continuously shuts in our face. That is why most end up here or at another support group where they won't feel judged.

Who ever thought our friends and family would judge us for being sick. Something that is not our fault. I even have my own mother comment on how thin I am and how great I look. (I lost a lot of weight since being sick). But if she looked closer, she would see my glassy infected eyes and the look of agony on my face from my headaches. I once told her if she wanted to lose weight to run naked through the woods and find a deer to ride. I said then you can be bit by a tick, get this disease and look thin and great like me.

Advice...you find out who your friends are, you surround yourself with the few people that are not going to piss you off, and you concentrate on healing yourself. The one thing I learned through all of this is that you can't change people. You can't make them act like you expect them to act. This is about you, not them. Maybe suggest them seeing "under our skin", that movie sums it up pretty good. Hang in there. I was where you are now many times. Thank god for my husband who is so supportive and my doctor,too. In reality that is all I really need.y

Sojourner, that was beautiful. You have me tearing up here. I know that was meant for Jen but I felt like it was meant for me too as I have struggled in the same way. Thanks for posting that beautiful message:)

Jen: I feel so bad for you. I know I'm older than you but you remind me so much of my daughter. She's had so many struggles in her life just like you. I always feel like I want to help you. I wish I lived closer.

I'm so very sorry your sister doesn't get it. I know how hurtful that is. My mom is the same way. I always want her to just listen butshe usually changes the subject and blows me off. I've lost friends from this disease too.

I wish I had a magic wand to make it all better for you. You have been through so much already. You know, even though you don't know us personally, you do have friends here. I don't want you to forget that.

Big Hugs!!

Hi Sojourner,

I have a feeling that your post touched a lot of people.  I know it helped me!  What started off as a rough morning (feeling very sorry for myself), got a lot better after reading your words of encouragement. Thank you so much!  Karen

I'm so thankful for all of your kind words. I didn't want to sound self-pitying when I wrote the post, but I was overwhelmed at the time and really needed an outlet.

Thanks for being that and more.

Jane, your follow up comment regarding tears and detox was pretty good icing on the cake!

Y'know, I'm not allowed to write this stuff unless I have personal experience, a heart seeking truth, a cup of compassion that's filled to the brim w/sincerity, a few lessons in grace and understanding and what it means to accept it in faith- all the while looking for a way to channel my own, too! :)

Jen,

Sorry that it has to be so hard for you and for so long.  I haven't been able to manage to get on here much lately, but my heart is with you.  Here is another hug for you!