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so unhappy, lonely cont....
May 3, 2007
1:26 pm
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robbie2007
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I thought I would just start over with a new thread...

MJ - as it turns out ...everyone left right after I said I had to go - so now I have some time again.

about the business - long story short - they sold it, i got laid off by the new owners. was unemployed for 6 months. got a new job. was unhappy after about a year or so. asked my brother to hire me for some of his other businesses. the new owners of the business that sold couldnt make it, and so we had to take it back. my parents are semi-retired. im working for my brother again ...things are ok but....i feel so alone.

May 3, 2007
3:48 pm
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Thanks for sharing that. I remember alot about your past and its nice to be brought up currently. How come you quit posting here a few years back?

Is your depression just starting again? Do you think you have cycles of depression?

I just recently got involved with a 12 step program called Depressed anonymous. It is teaching me to focus on how to make myself happy. There premise is that we sadden ourselves by the thoughts we chose to think. If we continue to focus on the negative that's what we continue to get. There is a rule of threes. For every negative thought I think, I have to replace it with three positives thoughts. Now that is a lot of work. That in itself makes me become more aware of my thoughts because I don't want to spend so much time coming up with 3 replacement thoughts. Another idea that I learned from the secret, a book I read that lead me to a website about the law of attraction is an activity called the judgement jar. For every negative thought I have, I have to write it down and put it in a jar. It helps you to become conscious of the thoughts you are chosing.

I am sorry you have felt alone but the good news today is you are not. You have had quite a few people reach out to you and that tells me that you can change the direction by putting your needs out there to the universe and ask for what you need!

May 4, 2007
7:43 am
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robbie2007
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Good Morning MJ.

I stopped posting because a person I met here back when we could exchange emails, convinced me this was a bad place to be. she pointed out all the negative stuff about people wanting to change but never doing anything about it and all they want to do here is sit on the pitty pot.

she also "convinced" me of a lot of things about myself and my family that werent true.

i dont know...I just stopped posting.. I continued reading tho.

another reason I stopped is that I got computer burnout.

I pretty much stopped everything...

I think the shock of losing my only job I ever had for 15 years just closed me down. and I sort of feel like I havent come around yet. but I want to.

this depression I'm in...I dont think it is just starting ...I think Ive been in a depression but its getting worse.

I tried to do something positive for myself after work yesterday. Tried to clean out my garage. Because of my fibro pretty much any hard physical activity will put me in bed for 2 days. my parents think im just lazy but thats not true. anyway, i got part of the garage cleaned out. I tried not to overdo it so I wouldnt feel terrible today.

May 4, 2007
7:52 am
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mamacinnamon
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ROBBIE:

May 4, 2007
7:57 am
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robbie2007
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Hi MamaC,

I just posted to you on the other thread.

May 4, 2007
8:16 am
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woops, let me try again.

Robbie:

I am sorry your folks feel that way. It is hard for a parent to look at their child and see someone is ill. Even harder to have empathy when the person really doesn't lokk sick. I am printing below a Letter to the Fibromite, which is to you from them saying how they feel. T hen will be a letter from the family to you explaining how they feel. (may have gotten that backward, but you'll understand).

Although this is a Copyright of Fibrohugs.com we grant permission for anyone to use this at any time as long as the following "Copyright of http://www.fibrohugs.com Written by Ronald J. Waller" is fully visible.

A Letter To "Fibromites"

A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.

Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.

We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt.

We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way.

You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected.

I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes...... so do we.

So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and accepting what fibro has taken from us, I think our relationships may be a lot better.

I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as Spouses.

--------------------------------------------------------------------------------
Although this is a Copyright of Fibrohugs.com we grant permission for anyone to use this at any time as long as the following "Copyright of http://www.fibrohugs.com Written by Ronald J. Waller" is fully visible.

The Letter To Normals

Hello Family, Friends, and Anyone Wishing to Know Me,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….

May 4, 2007
8:36 am
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robbie2007
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I havnt finished reading yet, but as I did something popped into my head that I just want to get out...

my brother has build a log home about 8 hours away. it is his summer home.

he keeps inviting me to go visit. it is on a lake with many activities like hiking and boating and such...

i keep putting it off because the trip to get there alone will do me in. and then to participate in activities? I dont want him to think I dont want to be with him or see his new house but I dread taking such a trip and Im embarrassed because I dont look sick. I look out of shape and overweight and that is what he will thing - im TOO FAT to go.

trying to lose weight is a viscious cycle of needing to exercise but hurting like hell from it.

May 4, 2007
8:37 am
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risingfromtheashes
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robbie...I haven't followed your whole story...but I noticed mamac posting about fibro...so I wanted to stop by and give you my support.

My mom has fibro...and I suspect I have it to, but refuse to acknowledge that I do.

My mom went thru life being told it was all in her head...my dad was NO help and often made her upset by trying to convince her it was all in her head.

***I*** know it's not all in the head...the symptoms are real.

So, do the best you can with what you got...and if that means taking naps and having down time...then take it.

I know it's hard to shrug off what other people say about you and the condition...but that's really all you can do.

Get support from people that understand...look in your area and see if there is a support group you can join...get information and show your family to help them understand.

And if all else fails...come here and let us support you. We all struggle with improving our lives...some people will just talk the talk, others will walk the walk...there is a good mix of people here...and most of us WANT to get better...just like you....but sometimes, the process takes longer than other people realize...so they judge and criticize.

I don't think this board is full of people that talk the talk tho...I have been here for going on two years and my life has improved dramatically and I know that many people here have made improvements....again, they may be small or large, so, don't let others judge our success.

Keep coming back..and when you need a break, take it....just know that you can get support here any time you need it.

May 4, 2007
8:48 am
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robbie2007
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do you know if fibro and depression are connected in a chemical way?

i'm sure having fibro makes for circumstancial depression - but what about chemical?

here is the attitude my parents (father) has about illness. back in the mid 90's I was having so much stomache pain I was doubled over screaming for my mom. she took me to the hospital and by the time we got there the pain was almost gone and i was embarrassed. the doctor there said to get checked out for gallstones. I did and had 5-6 gallstones. i had to have my gallbladder out. until my father saw evidence he thought i was faking it.

all growing up, any illness I had he thought I was faking it for attention. so now ..im afraid to tell him anything. so when i was diagnosed with fibro i told my mother who may or may not have told my father. even still i think she only half believed it and by now it is long forgotten. the only other family memeber i told was my older sister who im sure has forgotten too.

so im kinda on my own. and thank god it is not severe. Im ok most of the time unless i have to do something physical.

oh...and to attend functions - outings - family doesnt understand why i dont want to go. so i do. and then when i get home i just crash. im sure if i told them they would say its my weight problem. not an illness.

May 4, 2007
8:54 am
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Robbie, i told you i have fibro, and arthritis, this week itis kicking up bad. I also have a terrible stress problem which mama c, is familiar with and someday when i feel like it ill explain, but i truly think, no i know that the strees intensifys the fibro. Regarding the outsiders, no one understands unless they have it. I used to feel that way about victims of arthritis, thought it wasnt serious, well i have been given first hand convincing and regret anything i felt towards RA victims. I hope you can get some relief soon. Sometimes, exercixe helps, sometimes not, to me, its just another lesson in life. Bless you
Hi Mama

May 4, 2007
9:16 am
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robbie2007
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thank you everyone for your support with fibro...thankfully, it is pretty much under control.

what im concerned about these days is my sadness and loneliness. i am single and want to be - i used to be happy being alone. spending time alone didnt bother me. but these days i feel so ignored. no one calls me. i always call them. no one invites me anywhere. If i want to get together - i have to be the one to make arrangements. that makes me so sad. everyone is so caught up in their own lives - i guess because they have families - ive been forgotten. talk about bein on the pitty pot huh lol

May 4, 2007
9:26 am
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Robbie:

Get the book... Fibromyalgia & Chronic Myofascial Pain, A Survival Manual, Second Edition, by Devin Starlanyl and Mary Ellen Copeland. There is probably a 3rd edition by now. Anyway, this book explains fibro from what to how to the future, etc. I don't think there is an answer I could not find in this book. It is truly a must have.

On the exercise thing. Every time I get into a routine of exercise, or physical therapy, my body shuts down and starts screamin. Nobody can tell me why other than it is a flair of the fibro. Be very careful about exercise as to not overdo. I know when I overdo it can put me down for a week.

Do you have a good doc that believes in fibro. If he does not then move on till you find one that does.

As for the weight loss. That could be from medication or many other things. W/ me it is a possibility of meds, the sleep apnea, the edema, many many things could be contributors.

May 4, 2007
9:35 am
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It is ok to have a pity party once in awhile. Yes, you are probably right there about them having their lives to deal w/ and kids. I know I forget sometimes to reach out and I'm sitting here at home. I know that many times I feel as you do.. left out coz everyone goes on w/ their lives and I'm left behind. In that case you need to find something that makes you happy. Volunteer somewhere? Sit and talk to folks on a board? (wasn't that an original). Something that will help others coz when we do something for someone else it makes us feel good inside. Not sayin the lonely won't come back, we just have to learn ways of dealing w/ it.

Also, I do believe there is a direct link between fibro and depression. I'll check into it and get back w/ you.

May 4, 2007
9:35 am
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risingfromtheashes
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yes, robbie....depression is part of fibro...my mom attempted suicide three times before she found out what was wrong with her.

The brain chemical "serotonin" is responsible for depression AND fibromyalgia. So, often, an antidepressant helps with both.

My mom went thru almost EVERY anti depressant before they found the one that helps her fibro symptoms and her depression. The sad part is, the med that works causes side effects that she has to take other meds for. But in the big picture, it's worth it to her.

Without the meds, she is crabby, withdrawn, sleeps alot, doesn't want to eat, isolated, anxious and miserable...not to mention the physical pain. She sleeps to deal with all those symptoms...we often know when she has forgotten her meds cuz she sleeps more or she is easily aggitated and snaps at us.

Find a doctor that understands fibro and get on some medication...then your life may improve...but be patient, cuz what works for one person doesn't always work for another and it's totally by trial and error that they figure out what works for you.

Sleep apnea, irritable bowel syndrome, TMJ, depression, etc...are all common symptoms of fibro.

Not getting restorative sleep is a common symptom of fibro...which is also contributed by the apnea...and when a fibro sufferer doesn't get enough sleep, it really makes them suffer badly...it's a catch 22...the fibro causes bad sleep patterns, and it makes the fibro worse.

You are not alone...educate yourself and it may make more sense and make you realize things aren't so hopeless and that it's not all in your head and that it is fixable to some extent.

May 4, 2007
9:39 am
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Thank you rising, I'll not have to look it up now.

Yes, rising is right about the things she said. The sleep patterns are horrible. In my case I have severe sleep apnea. So, they cannot give me meds to help me sleep coz I stop breathing. But then they give me meds to keep me awake during the day due to the apnea, fibro, and meds I am on. I can go for months and only have 2 hours of sleep per night which causes TMJ, swelling, and other things. Some nights I can sleep 6 hours.

Please do find that doc if you don't have one that believes in fibro. Unfortunately, many docs used fibro as a trash all for illnesses they could not diganose so fibro has a bad rep in that sense.

May 4, 2007
9:39 am
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robbie2007
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i take zoloft and sulidac for my fibro and deopression. and BOY do i know when ive forgotten my meds.

May 4, 2007
9:41 am
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lol. I know when I don't get my meds also. So do the kids. I tell them I am a few hours late takin my meds and I need some time and they are GONE. Isn't that sad.

May 4, 2007
9:41 am
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white dove
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Hi Robbie
I to have fibro and understand where your coming from. i find it hard to travel far at all and i hate it, it wears you out so much, people think all i need to do is get out and lose weight lol oh they are so funny not. just because they cant see our pain and yes i hide my pain and depression as much as i can i get fed up with trying to explian to them how i feel even though i look fine, if only they knew what pain and torment we all go through with this condition. i suffer from depression more so when my fm kicked in harder, i had to give up doing what i loved doing and most days im home alone with the tv and pc for company oh and course my son whos 16, all i can say is try to get the support you can weather its on this site or others, i made the mistake in trying to deal with fm and depression on my own and it makes you very withdrawn into yourself it did me im just speaking how it got to me.
i have a friend who never takes time to come and see me and i have to go to her place if i want to see her, the same goes for my mum and siblings, i do all the running around but never get invited out or go anywhere. yes it gets lonely.
guess im saying hang in there. i understand how your feeling, i hope its ok to post this but have you been on fibrohugs.com theres a place where you can post to others with fm.
keep posting ((((((((())))))))))

white dove

May 4, 2007
9:46 am
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robbie2007
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white dove - i love your name. sounds peaceful.

i can tell you understand. thanks.

thank you everyone. i must try to focus on work now.

love, robbie

May 4, 2007
9:51 am
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risingfromtheashes
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robbie...I don't know where you live, but I know that my mom's health has improved by living in the south...where the weather is warmer.

Also, fibro patients can't exercise like normal people do...tho it is good for them in the sense that it makes you mentally feel better, but it often hurts to exercise, so most avoid it...I know that my mom feels so much better when in the water...at the beach especially, but she has to avoid it cuz the meds make her sensitive to the sun.

But when she is lounging in a pool or at the beach in the water, she is happy and feels so much better...and it's good for your joints, the sun is good for your mood (most suffer from seasonal depression during the winter or gloomy, rainy days)...but you can move freely in the water and it doesn't hurt as much, as long as you don't overdo it.

My mom was told to sleep with a fanny pack with tennis balls in it with the balls at her back, to keep her from rolling over onto her back, where her apnea is bad...but even on her side or tummy, she has bad apnea...it's just worse on her back. Also, sleeping on a wedged cushion, elevated often helps...other suffers use CPAP machines, to feed them oxygen, but often they are noisy and keep you from sleeping.

My mom's apnea is so bad she is forced to sleep on the couch because she disturbs my dad so much...otherwise, he will sleep on the couch if she doesn't.

Also, many fibro patients suffer from weight gain and have an intolerance to carbohydrates...I have heard many that say that they do better on a low carb type diet...avoiding white flour, sugar and wheat products...also dairy is known to contribute to breathing problems and weight issues.

There is so much info you can learn about this...it is amazing how much it affects everything in your life.

The best thing you can do is arm yourself with the information and find a good doctor to work with.

And get out in the sunshine...even if it's just out on the porch or in front of a sunny window...it always helps me.

May 4, 2007
10:11 am
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white dove
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Ty Robbie, i chose that name because thats what i am tring to strive towards, peace, peace in my heart. and white is pure and also my hp come down in a form of a dove when his son was baptised. a very lovely little girl sent me a white dove bird that sits on my printer, and i look at it and it does bring peace and calmness. im still striving for peace but i know it will come. as it will for you.

May 4, 2007
10:15 am
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white dove
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Rising a hug for you and your mum, (((((((((((()))))))))))))))))

May 4, 2007
10:34 am
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mj
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Good Morning All 🙂

Great Day to Be Alive and Surrounded by Compassion and Understanding and HOPE!

May 4, 2007
11:13 am
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Good AM MJ:

Just a quick HI before I'm out the door. Have a great day.

May 7, 2007
7:51 am
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here is a good example of being left out (forgotten).

friday, my mom stopped by the shop. she told me some place she was going on saturday, and i wanted to go if i was around. not becuz i particularly wanted to go THERE - but i wanted to spend some time with her.

so i told her to call me about a half an hour before she was going to go.

I didnt here from her all saturday. I didnt call her becuz i am always the one...

i got no call but i needed to call her on sunday. she said she was sorry that she forgot.

it just makes me sad - like, im the furthest thing from her mind.

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