My head hurts from crying.

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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/3/2009 5:16 PM (GMT -7)   
I know I have all of you here, but I wish sometimes that I could talk to my sister...she says it makes her uncomfortable when I talk about being sick and that she doesn't want to hear me be so negative. She thinks me expressing my fears is being negative...and then I DO end up being negative because I get so afraid that I end up saying "It's just not going to be okay. I know it."
 
I feel bad for making her feel bad, but I also think she should be there for me, even if it's just to listen. She shouldn't tell me not to talk about my own reality. Is that selfish? She makes me feel selfish.
 
I haven't cried like this since I started treatment...but today was so bad...I feel so alone and I was doing so well lately saying I was going to keep fighting because I couldn't imagine that God would make me live in this hell forever...that I should force myself to believe it will all work out...and now I feel the complete opposite.
 
This is mostly just a vent...so thanks for listening if you did.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/3/2009 8:13 PM (GMT -7)   
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..

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/3/2009 9:20 PM (GMT -7)   
Jen hun i know what your going thro and i have found friends i can and do talk to. as most people who do not have lyme can not understand. even our familys. if you ever need someone to bend a ear you can always email me.

i know i am new to most of this but i do understand and i do lesion. i just cant type to well..lol
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 7/3/2009 9:30 PM (GMT -7)   
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
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 7/4/2009 10:18 PM (GMT -7)   
Jen,
I am very sad to read your note. I think that so many of us can understand and even relate. There are things that we grieve in loss b/c of this battle. It flushes out all kinds of realities, family dynamics, social dehydrations, motives.

There was a time I felt Heather would never be to the next phase, but others who were brought into our lives by the Lord, believed for me and encouraged me. They could not know 'the plan' for her; but they hoped and that helped me to keep believing.

She has come a long way and it makes it easier for me to say to you that it will not always be like this. Stay the course. Keep fighting. Although you long for that support fm ur sister, and I (many of us) understand personally too; for some reason it is not to be right now. I am grateful that you have been led to trusted friendships along the way. Not the same; but, a gift. Try to channel to those few special people that God has brought into your life through this. They will support you and it will be a two-way blessing; even long distance. You will be a vessel for many b/c of your experience and the focus will not always feel so intense. I pray for a day when the relationships that have been hard to understand to be healed.

Its that slow, longggg, agonizing walk up the mountain that filled with obstacles; but not one that cannot be overcome with faith and loving friendships.

Hold on to your hope! I hear him again -"Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honor and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy."
Sir Winston Churchill, Speech, 1941, Harrow School
British politician (1874 - 1965)

Take care, Jen. Run to the refuge(Ps.91) and when u are ready- come back out and play!
Blessings,
Sojourner
~d
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth
www.stylebyheatherrose.com


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/4/2009 11:00 PM (GMT -7)   
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!!
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 7/5/2009 6:03 AM (GMT -7)   
Dear Cajungirl - AKA Hashimotos sister! - It was meant for Jen, yes, AND anyone of us who can relate and just need that little encouragement. Your signature relates to Churchill's attitude!!

Blessings,
~d
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth
www.stylebyheatherrose.com


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 7/5/2009 6:27 AM (GMT -7)   

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

 


gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 7/5/2009 8:53 AM (GMT -7)   
I feel [from experience] crying can be part of a 'herx' - also crying can help ease 'stress' - sometimes it is best to just let the tears flow - it is a natural body function which is there for a reason.

best wishes

gorbs x

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/5/2009 9:24 AM (GMT -7)   
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.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2009 9:56 AM (GMT -7)   
Jendays, I am so sorry about this strife in your life. I can't say anything any better than Sojourner did -- that was so touching and poignant. I also agree w/ others that floods of tears can be like a huge herx. A lot of hurt, strife, pain, grief and plain ole frustration can be washed away w/ our tears when we really let go and let them flow.

Suspect TBI in 1972 (date corrected by Mother!) Attacked tonsils, pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 7/5/2009 10:52 AM (GMT -7)   
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! :)
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth
www.stylebyheatherrose.com


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 7/5/2009 5:29 PM (GMT -7)   
During the first 2-3 years... I would look at myself in the mirror at night.... just falling apart, and would wind up in a ball on the floor crying..... sometimes my husband would hear me and just come in and sit on the floor with me and hold me. I really thought I was losing my mind. All the doctors kept saying it was in my head... others were giving me mouse size portions of abx's..... Every bone in my body hurt and all my senses were going HYPER! I've lost it many times with this disease.... and today, I'm losing it. Now 10 years into this and I am LOSING IT AGAIN!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- I begin to fall apart, 08/01-LD +, 10/01- Igenex and CDC LD positive, 10/02-LD +, 11/03-LD +, 10/07-Bartonella +, CD57=3, koseri IgA +, Morganella +, motgani +,Rocky Mountain Spotted Fever +, Typhus +, Klebsiella pneumonia +, Proteus miabilis +, Citrobacter i IgA +, Hafnia alvai IgA +, NKC4 +, Interleukin 4 (IL4) +, IL8, Immunobillin (IM01) +. 
Rx's 06/15/09: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Lyrica 600, Levaquin 500, Diflucan, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 7/5/2009 6:42 PM (GMT -7)   
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! 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/5/2009 9:21 PM (GMT -7)   
JELAINEP,

i so wish there was somthing that could be done to help with the feelings of despair we go thro. i pray its better for you soon.

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)

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