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Posted 8/4/2014 4:18 PM (GMT 0)
Why is it whenever I think I'm having a good day, something blows up in my face?

I actually felt pretty good this morning. Brain felt pretty good, physically felt good....yes the usual diarrhea (my new normal I guess), but overall a pretty good day for me.

Until I see my dad and we start talking. I thought I knew what the plan was for today, but he had something different in mind. I get overwhelmed, he just stops talking to me and totally ignores me. After things cool down a while later, I tell him that I feel completely ignored, insignificant and totally unloved when he shuts down like that. And par for the course, he doesn't respond and totally ignores me.

I wish I had a way out, but I'm just too sick. And I can't leave the animals, since he doesn't have a clue of how to take care of them when they get sick. I'm totally stuck here. I wish I had a way out, but there's nothing.

I lost the few friends I had years ago, and my sister is totally overwhelmed by her life. No other family. I have no one.

I've been trying to make do with the animals. Trying to convince myself that they're enough. At least they're always around and love me no matter what. Guess humans are incapable of unconditional love.

I. Am. Alone.
Posted 8/4/2014 4:41 PM (GMT 0)
Sayyadina - I'm so sorry you don't have support. Is there a support group near you that you could go to?

Hopefully your dad will come around. In the meantime, take comfort in your animals. I know sometimes when I'm alone, I just snuggle my cat and it does help somewhat.

Hope things get better for you. My thoughts are with you.
Posted 8/4/2014 4:48 PM (GMT 0)
You could find a psychologist that does phone consults. It's great to talk to someone that just listens. My family tries too hard to force me to be normal when I'm not. Then everyone just thinks it's a mental problem and its not, it's very hard for people to understand, they don't get it.
Posted 8/4/2014 10:12 PM (GMT 0)
I sent you an email, Sayyadina. Hang in there, we care about you!!!
((((((((((hugs))))))))))
Posted 8/4/2014 10:21 PM (GMT 0)
Hate that you are feeling this way Sayyadina—

But you are not really alone. I have to remind myself of this every day it seems, so I certainly understand what you're feeling. You must keep posting. I went through a pretty dark period last month (I also live alone, all my family is out of state, all my friends have moved away and my cat died!) and I had lost touch with the forum…but a few posts here helped so much.

This treatment is tough to go through when you're feeling so alone but keep posting—I promise it will help.

-p
Posted 8/5/2014 5:38 AM (GMT 0)
So sorry,

I know exactly what you mean; seriously.

Will check in tomorrow.

Margaret
Posted 8/5/2014 12:21 PM (GMT 0)
My heart is aching as I read your post, knowing there you are, dealing with all of this, and here all of us are, willing and wanting to reach out to you, to take your hand, to help you right where you are at, to do what we know can help. Support. Support. Support.

We are here for you, any time of the day or night. It's awesome, couragious, powerful for you to let us know how you are and allowing us to support you in the ways we are able. I'd love to send you an email, but your email is turned off. If you want, email me. I am open to listening and supporting as best as I am able.

Thank you for sharing with us and I pray doors open for your needs to be met, with love and care. I'm sorry those in your life have dropped the ball. I know exactly how all of that feels, and the internal pain that can cause. Hang in there. Use us here as your sounding board, and I hope you know that even if you post 100x in one day, that's ok. If that's what you need, then do what is RIGHT for YOU. We won't judge, nor reject, or turn away. Nope, won't happen.

Here's a gently hug, and lots of positive thoughts to you. We may be alone, but we do have each other, right here, today. We must use what is available to us to get us through this dark time in our lives, and we WILL get through all of this, and here, we get to do all of this TOGETHER.

I don't know how I'd be doing, if it wasn't for this wonderful, supportive, informative and loving group.

Again, I must shout out .... WE ARE FAMILY. The family that supports, listens , encourages, helps, and truly, truly understands. And know, that when one of us is suffering in silence, each one of us here is right there, too. United we stand, and united we conquer. I pray you are encouraged.
Posted 8/5/2014 4:28 PM (GMT 0)
I'm so sorry you have to go through this. :(

One thing I would suggest, is to make sure your potassium is within range. I had really bad "d" and had to go to ER, and it was due to low potassium. Zithromax was making me horribly sick.

Wishing you recovery!
Posted 8/5/2014 5:21 PM (GMT 0)
We are here for you. Keep posting, okay? :)
Posted 8/5/2014 5:47 PM (GMT 0)
Hang in there and get better - when you are strong enough you will make new friends - the old ones are not worth keeping if they abandoned you. My son was misdiagnosed all year - had lyme 4 years ago, undertreated, it's back. Ruined his freshman year of h.s. His friend are gone, oh, and so are the moms I thought were my friends. The family is shredded and interestingly, he games every waking minute and plays with others and chats with them - says he's not alone. Yet, I feel alone and abandoned. It's just him and me, and boy he is wicked nasty to me 24/7. I'm determined to save him and drag him through this h... till we reach the other side because he certainly can not. It's now in his brain, neuro psychiatric, rage, spitting, hitting, etc.

I feared he was lonely and miserable - refers to himself as insane - broke my heart. He finally started to get the real help he needs in May after I finally figured out the whole puzzle and contacted LL doctors. It's going to be a long road they tell me.

I have been miserable like you, though not the patient, in that I feel like everyone including the family abandoned us - does not want to deal with it - really they don't understand, and it's hard when it's all mental, no pain. Hard to have patience. Most of all I am disappointed that friends would turn away. Who does that? That's when a sick loved one needs you the most! I'm sorry you are going through all this.

Love your pets - they help with healing and look forward to a new life - keep dreaming, don't give up. I wish I could say all these things to my son and he would listen and know he is loved, I hope they help you!
Posted 8/5/2014 9:11 PM (GMT 0)
Hi Lymebrain Mom and Sayyadina,

Lymebrain Mom-I went through the same thing as your son when I was 15. It took over a year to get a diagnosis after being told that it was all in my head by specialists at top hospitals. My friends abandoned me and I was so sick I couldn't go to school. I became angry, depressed and thought that I was going crazy. When I went back to school, my friends had circulated rumors that I had gotten pregnant and gone to live with my aunt in NY. It was tough for me and my family but it got better. I got better and I became a better person for having gone through it. My dad stuck by my side through it all which I never forgot. Your son will do the same.

Sayyadina-I am so sorry you are going through this. It's hard for folks to know how to react to us. We look fine on the outside at times but can be experiencing a lot of pain. My hubby says I "fake it" vey well. Some people just don't know how to handle it and are uncomfortable. It makes it tough and lonely at times. This message board has made it easier for me to find others who are going through the same things. I understand your love of animals and have a small hobby farm myself. It's okay to loose yourself in them. Sometimes they can be better company than people. Just don't forget to keep reaching out. Hugs to you and your fur babies!
Posted 8/6/2014 12:41 AM (GMT 0)
OH!!!!!!! I LOVE YOU DAISY'S MOM!

Thank you, I needed that. My son is / was 15 until last week - didn't even realize it was his 16th birthday until people said something. He has everything earned except doing his Eagle project to be a fully decorated Eagle scout. My husband is chairman of the troop. He was slated to be top 10 in his class, he was one of the leads in a school show - had it all.... now a shell.

I'm SO SORRY for what you went through. My husband sits in the other room yelling "send him back to the psych ward"... he is a good man, but if he cant' fix it, if he can't understand it, he has no patience for it. I have been told I have the patience of a saint - but I gotta tell ya, I am REALLY being tested here.

When he's cursing at me, telling me I'm the worst parent ever, he hates me, raging, etc. even now, you inspired me to go get a hug and he said no, I didn't ask for one. REALLY???? I miss him. He was so charming, loving, personable, smart, everything....

I have four children and have neglected the others to immerse myself in healing him.

They are 21, 19 and 13, so for the most part except the little one, ok. Well, except my oldest, he had lyme too. They were in the same tent at scout camp 4 years ago, but he got the rash and I got it treated immediately.... but now I read it can be latent 10-20 + years... so he is nervous and freaked out about all my lyme talk.

I so thank you though. I have been on parent help yahoo site and the stories are so scary. I'm so happy for you that you healed and are well. Stay on a protocol, please. I wish you could connect and encourage my son - I'm sure you followed the drs. You said your dad stayed by you.... where was your mom??? Is she more like my husband?

Sayyadina - listen to Daisy's mom - she is a love !!!!!!!!! Wish I had her here with me - I'm sure you do too. Don't let it get to you. I will be here for you if you need me. I can send you my personal email as well if that would help. By the way, we have been through many pets. Fish, hamsters, guinea pigs, rabbits (one is still alive at 9yrs old), dog, etc. I take the strays with no home, they need love too.

Bless you both, I needed you in my life today! lymemom
Posted 8/6/2014 1:37 AM (GMT 0)
Sayya,

I had C. Diff., and it resolved (mostly) with S. Boularrdi (Florastor in drugstores), probiotics, enzymedica digestive enzymes, digestive bitters, and licorice root tea, along with solid extract of licorice (supplement). Also juiced ginger root. I ate a high-protein diet. Now I've gotten to the point where I can finally eat some grains.

As far as being alone, that really, really, really sucks, doesn't it!! HOWEVER, you can and will get through it. Once you are better, you will be able to go out socially, and invite people to your house. If your family isn't being supportive, let go. Wait until your Dad and sis. are in a better space.

There have been times when I felt completely alone, and I felt that there was not one significant person in my life. That's when I relied on my pets (ok, I had long-distance friends). For an entire month, I was completely alone in a cabin while new flooring was being installed in my house--no friends, no family. It felt very strange, surreal, incredibly unsettling.

It's only this year, that I have felt less alone, even when I am by myself. I'm not sure what shifted. I've made a few new friends. I hang out with my ex-bf. That sounds strange, but he'll do, for now!!

The worst for me is when I have a Babs or Lyme flare, and then I truly feel as if I'm going crazy. I forget everything, and I tend to have quasi-auditory hallucinations (when something like a fan is running).

I know for a fact that my sister thinks I'm crazy, and she and my nephews avoid me like the plague. I went off of FB so I wouldn't have to see her pics anymore. I took all her all the pics of her off the wall. It helped some.

Even if feel alone, you are not alone. The earth is under your feet, supporting you. Take in the company of birds, trees, and plants. Go outside and walk, and feel the energies of living things. Sit by a body of water, or a river. Go to the park if you are in an urban area.

Let us know how things go.

Margaret
Posted 8/6/2014 8:06 AM (GMT 0)
sayyadina, One thing I've learned in life is family (generally people of all relation) suck, and lyme disease sucks, and learning not to give a care really comes in handy. I know how you feel, and I hate to hear people (you probably feel the same way) say "your not alone" when if you where homeless in front of a church on a Sunday no one would offer you eye contact let alone support regardless of your mutual similarity. My mother has not come to terms with the fact I probably will not get better. But remember its better then being treated like an invalid out of pity, and use the excuse (as I often do) to do things you've always wanted but where afraid would distance you from others...if your already being isolated might as well...because the truth in this disease is we can die tomorrow. My advice might not suit your taste (to each their own) but hopefully you found it humorous and it made your day at least a little better.

Post Edited By Moderator (Traveler) : 8/7/2014 3:25:20 PM (GMT-6)

Posted 8/6/2014 8:38 AM (GMT 0)
Well, I for one found that funny, and quite refrefreshing, and I like the idea that u might as well be completely youself as opposed to walking on eggshells in fear of losing friends and family members. What have u got to lose? Yes, family members are the worst, except for a few understanding spouses, maybe bc that's where we invest our greatest expectations? Friends van be a real pain in the butt too, as when they say, "Why don't you just act more positive, and maybe u will get better! I wonder what would happen if I just told my sister to go take a flying eff at the moon! M
Posted 8/6/2014 12:04 PM (GMT 0)
That's what's so sad here it that I am there for him 24/7, and I don't know if he will get well, but he could care less about my efforts.

I do not have lyme, but have had many serious illnesses and surgeries in my life (still recovering from one now), and I lost 2 babies and both parents in a 7 year span. As an only I felt like an orphan and I know that no one can walk the walk for me or for any of you, but they can find compassion and listen and be there for you for whatever you need.

I guess people are too wrapped up in their lives, but "get on with your life", "it all happens for a reason", "something good will come out of this"... REALLY - NO, it just stinks - I hated hearing their pearls of wisdom - wait until it's their turn and then they say... Oh, now I get it.

You don't have to piss them off, but you can eliminate them from your life as much as possible to save yourself from the pain they cause you.

I know if my son could go to scout camp, do summer reading, hang out with his friends rather than killing zombies for 25,35 or 40 hours straight, he would. Why do people really think he chooses to sit all summer in the corner of the dining room, really? He is not in pain, it's all brain, and neuro, ocd and tics - not sure what is really firing in his brain, but I'm sure once time heals him, he will not be in the corner killing zombies with others all over the country. He can get back to living his life and laughing with some real, new friends, or old ones kind enough to rekindle.

I am a loner by nature and very happy with that - some socializing is good, but it's great to be able to be by yourself and do things you enjoy with no one "advising " you about how your life could be better if you would just change it. Same for my children. A couple a very social, the others prefer research and books, etc.

All of you, please know I care and I empathize with your pain, loneliness and suffering. Too bad there is no group therapy we could all blink ourselves too since we are so spread out - at least the internet helps. I really could have used that when I lost the babies.... was not around then.
Posted 8/6/2014 1:39 PM (GMT 0)
Maybe someone could answer me.... you all are so alone and want to be loved and cared for - why is he rejecting that from me? Is is from all the bad things that happened this year with misdiagnoses and the hospital stay (psych ward)? Cause no matter how hard I try to give him space, good/healthy food, attention, love and meds. seems he still hates me...
Posted 8/6/2014 6:17 PM (GMT 0)
Does your son have Lyme Disease?

Is that whom you are talking about?

Give him his space, and just be positive around him.

He'll most likely come around.

M
Posted 8/6/2014 6:57 PM (GMT 0)
You sound like me talking Lymebrain Mom, only the one that is avoiding me doesn't have Lyme. I have a good relationship with the one who is ill, but we went through a few difficult times and still do at times.

It is hard when you want to help your child and they reject you. It's hard for kids your son's age to deal with and accept that they are chronically ill. He may be depressed too. They see their friends going on with their lives and that is hard for them when they can't continue moving ahead through life like they should. Personality styles can affect how they act towards those trying to help them.

Sayyadina, I'm so sorry your dad treats you like he does. Some guys are just not able to deal with negative things and lack compassion. I know of few like that.

I do hope you feel how people care on here. There are many truly caring people here to offer you support and understanding when you need it. I wish I'd had it all the years my daughter was undiagnosed. I got a lot of criticism from people over those years and she lost friends along the way.
Posted 8/6/2014 7:49 PM (GMT 0)
Hey Sayya,

Sorry you're so sick. Let me know (via) if I can help.

m
Posted 8/6/2014 10:22 PM (GMT 0)
Hi all. Although I'll be gone from the site for a couple weeks and not able to join in, I suggest starting a new thread specifically for neuro/psych Lyme issues, and another for Kids with Lyme - to find more specfiic  feedback.

If you use the Google custom search box near the very top right corner of the page (right under Join Healing Well in the top dark blue bar) you can find old posts which will show you how widespread these problems are. (Denial, lack of support, rage, etc.)

I wonder how many people are unwilling to mention the rage aspect because it has such negative connotations. I have delt with some serious emotional issues in my son, including rage and depression. I am very relieved to say most of his temper trouble went away with antibiotic treatment. Hows that for off label? No, it wasn't actually prescribed for the emotional issues, it was for MY peace of mind because I THOUGHT my son had Lyme. Duh! The CDC thinks so too!

I wish my whole family was behind me in treating my son. Fortunately I do have one person who is and that helps me cope with the resistance from other people. The people here on this site have been priceless.

I like to listen to parents of kids the same age to find out what their kids worst days are like. It helps me know what is likely to be a normal snit vs a Lyme influenced rage.

If you can reduce your son's time killing zombies I think that is a good idea. Even if his gaming continues with a less violent game, studies show the violence in games is harmful to emotional balance.

I tell my son many of the things I learn about Lyme effects so he can know not every feeling he gets is just part of him. Make sure you give each kid some 'them-centered' time, some how, some way. If they get too left out you will have a heap of resentment to deal with too. (You centered time  - hard to come by - can save your own sanity!)

Most of all,  pick your battles. Don't waste much time trying to make believers out of those who don't want to believe.  Just  skip the explanations. He's sick in bed today. Not he's having a Lyme day. Whatever is the least arguable statement. Don't give an opportunity to debate what you know. You know your kid best.

As for diarhea if you check the labels on the various probiotics, there's a lot of different good bugs available. A wide variety seems most likely to be like our original mix. There's past posts about brands and mixes.

Happy hunting for good bugs. Happy hunting the bad bugs. I want a taxidermied Bb on a slide.

Posted 8/6/2014 10:34 PM (GMT 0)
Lyme rage. Even my dog had it. She was attacking my other dog, and she bit me when I got between them.

She's on various treatments, and the Lyme rage is completely gone.

Margaret
Posted 8/6/2014 10:41 PM (GMT 0)
Wow!
Posted 8/7/2014 2:18 AM (GMT 0)

Lymebrain Mom said...
Maybe someone could answer me.... you all are so alone and want to be loved and cared for - why is he rejecting that from me? Is is from all the bad things that happened this year with misdiagnoses and the hospital stay (psych ward)? Cause no matter how hard I try to give him space, good/healthy food, attention, love and meds. seems he still hates me...

Lymebrain Mom
My mom went through the same thing with me, I had to learn just because I was in emotional turmoil it gave me no right to treat her badly, but unfortunately I learned that quite a bit later and I still carry that guilt. sounds like he uses his emotional pain as a way to distance himself. my suggestion is take away the video games and force him into the world little by little because you don't want him holding onto these habits. my mother said something to me that made such a profound difference in my life. "If you cant change it embrace it", at first I hated her for it but once I got out and saw the true majesty in the little things in life I couldn't be stopped. My addiction was chat rooms tho at the time. I remember the day I decided to take her word on it. I heard kids playing out side I looked at my screen and decided to turn off the computer and as I called it "have a real life". from then on I made friends, and quite a few enemy's regardless of my problems. I grew a thicker skin and got on with my life...sometimes you have to push them out of the nest, they might not like you for it today but they will appreciate you when they are older...just remember it has nothing to do with you most kids go through these phases, He's just trying to find the best way to cope he can figure out. He has to learn a very grown up lesson at an early age, so it will definitely take some time.
Posted 8/7/2014 5:50 PM (GMT 0)
Califonia Cat,.

I can share - you can email me. I have four children, two in college, so I've been through enough.

I am wondering how long before he is well enough to get back to homework and school and life. THinking of having him repeat 9th gr. w/in home instruction - it's so limited I don't want him venturing into 10th and missing a lot of basics. My zombie killing son was slated to be top 10 in his class, had a lead in the play, plenty of friends and super smart - last year he was not doing homework, not studying for tests and pulling insanely bad grades.

Don't really want him back in the mainstream until he can sit still and focus and people won't make fun of him. The drs. just keep telling me it takes a REALLY long time... I don't know what that means.... the last few months was a long enough time for me!!!!!!!

HOping this Pinella works it's magic by Sept! but not really convinced it will. Plus, he sleeps 8 am - 5 pm or so now and is up all night... try to leave healthy food for him and keep the junk out of the house. ugh.
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