SleepyRoller

Family Doesn't Understand.

37 posts in this topic

Hi I'm a 23 year old female and I just got diagnosed with narcolepsy w/ cataplexy last week. I've been dealing with the symptoms for many years, but in the past year they have become so bad that I couldn't deal with it anymore and had to go through with the sleep study I had been putting off since my psychotherapist determined that my "panic attacks" were actually cataplexy attacks over a year ago. Off of all of that I have sleep paralysis about 5 times per month, the start of cataplexy attacks whenever I let them happen, and during my severe cataplexy attacks I get hallucinations. My therapist taught me a technique to stop them that works wonderfully most of the time.

So onto the main point of this post: My family doesn't understand what having narcolepsy is like, and what I go through on a daily basis. My parents specifically just tell me that with a regular sleeping schedule I'll magically be cured. When I was young I got diagnosed with ADD and my Mom is still so fixated with that diagnosis of ADD that she refuses to believe that I have narcolepsy, even though she's seen the results herself with a very clear diagnosis.

I'm at the end of my rope, and I don't really know what to do with her or how to deal with her because it's just so incredibly frustrating to explain what I feel like and what I go through on a daily basis. I try so hard to explain it to her and send her articles to read and she just doesn't.

Does anyone have a similar experience? What else can I do to convince my Mom that what I go through isn't "normal"?

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My parents are the same way! Except with me, it's more like the girl who cried "wolf". While I've been fatigued for the past ten years, it worsened during college and I didn't have my first of three sleep studies done until four years ago. That resulted in a diagnosis of moderate obstructive sleep apnea (no one, including my doctor, could figure out why). A sleep study two years later revealed idiopathic hypersomnolence but no OSA, and my most recent sleep study, which was a month ago, finally revealed narcolepsy. My parents are were almost humoring me when they listened to the diagnosis from my latest sleep study, and my dad didn't say anything to me about it for a few days. Then he finally commented that he'd be surprised if it was actually true. I tried to explain to him that it's very unusual for REM sleep to appear during an MSLT after a person slept for more than 6 hours the prior night, as I had done, but I could tell he wasn't going to believe me.

My mom wants to believe me, but I've had so many different sleep-related diagnoses in such a short period of time that she's not sure how to take it. I imagine she thinks it will be disproved in two years, just like the other diagnoses. It doesn't help that her GP told her it was a "shame" for me to have narcolepsy attached to my name, and that I should definitely have another sleep study done in two years to see what the results are then. I had to explain to my mom that it was possible I wouldn't exhibit REM sleep during any naps, but that wouldn't mean the narcolepsy diagnosis was wrong. I don't think she understood it, though. She has warned me not to tell people about it so I don't jeopardize future job placement, etc. Then she reminds me to find a job.

Given that narcolepsy has been found to run in families, I have encouraged my family members to have a PSG and MSLT, but no one is listening to me. It's pretty disappointing, especially since most of my nuclear family seems sleep-deprived for one reason or another.

SleepyRoller, I wish I had some advice to give you...but I really don't. I'm wondering the same thing you are! My parents would constantly blame my terrible sleep schedule (even if I was on a normal one) or my diet or something I was doing as the reason I was always so tired. They've stopped doing that as often as they used to, but they haven't offered any sympathy for how I feel and how my condition is worsening. Everyone else would always say, "You're tired?! I don't understand how you could be," and I didn't, until recently. I think the sad truth is that most people won't understand narcolepsy unless they experience it.

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I remeber what my impression of N was long before I was diagnosed and of course I was way off. But the fact is, there is little research going into N, and therefore little awareness (no money in it). I have been dealing with a tremendous amount of guilt because my kids want to do stuff with me and lately I can't. My wife doesn't care much about the diagnosis or how hard I struggle day to day and the quality of our relationship is a shadow of what it was. I think this relates to your situation in the fact that if this is someone who loves you, why do they have to understand it before the show compassion or at least a little interest? I sometimes go through the "why me" phase and then I ask "why not me"? I mean, narcolepsy exists right? So that means someones gonna get it..... and looks like my number got pulled for N and thats that. I need to do what I need to do to get better because there is quality of life in play. If my wife, or anyone else close to me wants to sit around and *BEEP* because I'm tired all the time they are free to do so alone, I've got better stuff to do (anything). Bottom line, it's important to know that support from loved ones is helpful, but not needed for success.

BD

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On a funnier note . My wife was having lunch with friends and the topic of autoimmune diseases comes up. My wife says that her husband has one. The friend asks what it is and my wife realizes that she can't remember what it is that I have. We both had to laugh about it because it really tells more about her memory than her lack of caring. She has always been wonderfully supportive of my needs.

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My family doesn't really understand my N either. I am 27 and was diagnosed at 24, though I began to display symptoms at about 15. I currently live with my sister who can't understand why she has trouble waking me. My extended relatives think I'm lazy, even though I work full-time and am going back to school part-time with N, and often ask what time I went to bed the night before if I have a sleep attack. I also find many people to be put off by the fact that I take Ritalin for my N.

Does anyone have advice for getting family to understand?

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I don't have advice, I just want to add my experience. It took months to convince my family I had a legitimate health issue. My mom, brothers (and their wives and kids) all live about 400 miles away--I visit a couple of times a year, but they're always bugging me to come more often. I do love that they want to see me more often, but I resent a little bit their expectation that I always be the one to take work off and travel. During the past months--when the sleep issues became severe, and while I was working on getting a diagnosis--I just couldn't seem to make them understand that my health problems were real, that the tiredness would not just magically disappear if I took a vacation, that travel wasn't even a distant possibility. Then I got my diagnosis. I did want to tell them, but I was worried about my mom's reaction--I had a debilitating major depressive episode while in graduate school, and when I told my mom, she was incredibly dismissive. "Depression" wasn't a real disease, she said--I just needed to try harder, find a less stressful career (I'm a scientist) and pray more. <sigh> (For the record, I am religious, and I do believe in miracles--especially the miracles of modern medicine!)

My teenage niece's reaction was not that surprising ("Wow! I know someone with narcolepsy!? That's so cool!")--compassion isn't always a teenager's strong suit. My younger brother was somewhat supportive ("Sorry, dude."), most of the family ignored my news, but my mom's reaction blew me away. "This is good news," she said. "Now you can quit your job and live on disability benefits!" I was kind of stunned. I certainly wouldn't judge anyone who chose to access disability benefits, but I would only choose that as a very last resort--if I'd tried absolutely everything else to keep working. I love my work--I spent eight years in college and grad school training for my work--it's fulfilling and important to me. And the notion that a chronic illness could be "good news"? Not very understanding.

Fortunately, I have some good friends who have been really supportive. But I think we all want to feel like our families understand and support us, and it's disappointing when it doesn't happen.

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I know no one has posted on this thread in a while... I am newly diagnosed with N. After dealing EDS for quite a while. Finally having a diagnosis is somewhat relieving. However, STILL everyone is expecting just as much as they ever did from me and they just don't seem to understand. I even inactivated my Facebook page (which is a big deal b/c we have many friends and family in other states) because I just don't feel like hiding what I have from EVERYONE.

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I know no one has posted on this thread in a while... I am newly diagnosed with N. After dealing EDS for quite a while. Finally having a diagnosis is somewhat relieving. However, STILL everyone is expecting just as much as they ever did from me and they just don't seem to understand. I even inactivated my Facebook page (which is a big deal b/c we have many friends and family in other states) because I just don't feel like hiding what I have from EVERYONE.

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I know no one has posted on this thread in a while... I am newly diagnosed with N. After dealing EDS for quite a while. Finally having a diagnosis is somewhat relieving. However, STILL everyone is expecting just as much as they ever did from me and they just don't seem to understand. I even inactivated my Facebook page (which is a big deal b/c we have many friends and family in other states) because I just don't feel like hiding what I have from EVERYONE.

 

At the top of the 'Supporting Family and Friends' board is a post that's been pinned ... I think it's called 'When Family and Friends Don't Understand.' The very first post there includes a very, very well-written letter that can be sent to family and friends explaining what Narcolepsy is and what it means to the person who has it, how it can affect their life, their relationships, everything. I suggest you take a look at it. It could help you make your family and friends understand just what you're going through.

 

Unfortunately, some people will never understand, but it's up to us to try to educate those closest to us so they know what to expect. They can't figure this out on their own any more than we can.

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Thanks for pointing that out. I hadn't come across that yet. I'm still struggling within myself with the N Dx. But I think as soon as I'm ready I'm going to use that letter.

It is our own choice to educate those around us or in our everyday lives, you are absolutely right. At this point, where I am, I'm just not ready to talk about it.

Thank you again.

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I didn't mean that to sound like a slight! More of a gripe, because there's no really reliable information available in the mainstream media. All people see there are the extremes--and then it's only good for a few laughs. There are almost no mainstream sources that actually treat Narcolepsy as the serious disorder it truly is, and the huge pile of misinformation and tendency in the media to blow it off as a cheap joke are very frustrating to those of us who have to try to make even just those closest to us understand.

 

So, please, don't take my comment as me telling you to suck it up, get off your keister, and do it. You can't help anyone else understand it until you've accepted it yourself, at least that's my belief. You can't tell others what to expect until you've had the time to not only accept the diagnosis, but at least begin to come to terms with the changes it means in your life. If you don't know what it means to you, in your life, how can you tell others?

 

The letter is an excellent one for loved ones, true, but it's also good for us. By that, I mean that the first time I read it, it helped me at least begin to understand what I would be facing and how this was going to change my own life. I joined NN at the beginning of the year, and one of the things in the membership packet was a hard copy of that letter. I now have it sitting on my desk and, every now and then, I sit down and re-read it. It helps to remind me that it is real, Narcolepsy is not going away, and though I'll have to deal with it for the rest of my life, I don't have to do it alone.

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I didn't mean that to sound like a slight! More of a gripe, because there's no really reliable information available in the mainstream media. All people see there are the extremes--and then it's only good for a few laughs. There are almost no mainstream sources that actually treat Narcolepsy as the serious disorder it truly is, and the huge pile of misinformation and tendency in the media to blow it off as a cheap joke are very frustrating to those of us who have to try to make even just those closest to us understand.

 

So, please, don't take my comment as me telling you to suck it up, get off your keister, and do it. You can't help anyone else understand it until you've accepted it yourself, at least that's my belief. You can't tell others what to expect until you've had the time to not only accept the diagnosis, but at least begin to come to terms with the changes it means in your life. If you don't know what it means to you, in your life, how can you tell others?

 

The letter is an excellent one for loved ones, true, but it's also good for us. By that, I mean that the first time I read it, it helped me at least begin to understand what I would be facing and how this was going to change my own life. I joined NN at the beginning of the year, and one of the things in the membership packet was a hard copy of that letter. I now have it sitting on my desk and, every now and then, I sit down and re-read it. It helps to remind me that it is real, Narcolepsy is not going away, and though I'll have to deal with it for the rest of my life, I don't have to do it alone.

LIKE!

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I didn't mean that to sound like a slight! More of a gripe, because there's no really reliable information available in the mainstream media. All people see there are the extremes--and then it's only good for a few laughs. There are almost no mainstream sources that actually treat Narcolepsy as the serious disorder it truly is, and the huge pile of misinformation and tendency in the media to blow it off as a cheap joke are very frustrating to those of us who have to try to make even just those closest to us understand.

So, please, don't take my comment as me telling you to suck it up, get off your keister, and do it. You can't help anyone else understand it until you've accepted it yourself, at least that's my belief. You can't tell others what to expect until you've had the time to not only accept the diagnosis, but at least begin to come to terms with the changes it means in your life. If you don't know what it means to you, in your life, how can you tell others?

The letter is an excellent one for loved ones, true, but it's also good for us. By that, I mean that the first time I read it, it helped me at least begin to understand what I would be facing and how this was going to change my own life. I joined NN at the beginning of the year, and one of the things in the membership packet was a hard copy of that letter. I now have it sitting on my desk and, every now and then, I sit down and re-read it. It helps to remind me that it is real, Narcolepsy is not going away, and though I'll have to deal with it for the rest of my life, I don't have to do it alone.

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I was not offended whatsoever. I didn't even think you were being a "gripe"! Lol. I truly appreciate you pointing out that letter. I was just stating the fact that I will most definitely use that letter, in my own time. But I wanted to make It clear that I do agree with you about educating our family and friends.

You are also right about people only seeing the extremes. Out of the few people I have told, (that are people that aren't close to me) one of first things they ask is something along the lines of "And you drive!?" It is very frustrating. But then again I guess only the media is to blame for that, right?

I enjoy this website. I can come here and not have to explain N to anyone b/c everyone already understands.... Even more so than I do.

I am grateful for all the information, advice, word of wisdom or what have you.

Thank you again!

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I was not offended whatsoever. I didn't even think you were being a "gripe"! Lol.

 

I'm glad to hear that! When I re-read my post myself the next night, I thought, "Wow, way to be a little snot, Kendra!" I wanted to make sure I clarified what I meant, in case anyone else read it that way!

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I have been "stalking" these forums for about 6 months, just reading and absorbing information and finding common ground in everybody's stories and experiences. I have just recently started posting and didn't realize how much I had to say!

I am absolutely with you on this. I'm 25 and have been diagnosed for just about 1 1/2 years now. My dad is a wonderful guy but is very "old school" in a lot of respects and just doesn't get it. I have kind of stopped bothering trying to talk to him about issues that I deal with. I talk to my mom regularly, so I frequently discuss things that relate to my narcolepsy and how it affects me. In the last 2 months or so, I was having an awful day and she made (yet another) comment about N that really irked me. She loves to give "advice" on things that she knows nothing about. I kinda went off on her. But honestly, it was one of the best things I think I could have done, because I had the chance to tell her how hurt I was that she wanted to tell me how to live my life with N without knowing, or caring to know, anything about it. When I would bring things up she would often say, "oh, I don't want to hear that. You know it will just make me worry about you."

When I blew up on her, I told her many of the reasons that I felt hurt and misunderstood by her and my dad. When I was dxed, I thought that finally I had an answer, I could move forward, the people in my life would know what was happening with me. When things didn't change, I was extremely upset about it. I guess I feel though that people are inherently selfish by nature, and the reality is, that if it takes work to understand something, they probably won't bother.

I guess I rambled off a little bit there, but what I'm getting to is that my best advice to you would be to not only educate those you love on N, but your feelings about how you are perceived as well. Those around you may look at things with a different perspective if you explain how their actions (or lack thereof) are making you feel.

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Thank you all. It's so nice to vent and talk to people who actually "get it". I can't say that enough. It doesn't matter what I do. I did try to explain to my mom and she said I need to get a second opinion!! I was appalled and just got off the phone. When you struggle for years to find out what is going on... Why am I so dang sleepy/tired 24/7, the LAST thing you do when you get an answer is get a 2nd opinion! Ugh!

And I I try to tell my friends how its such a struggle to just get out of bed in the mornings.. They say yeah, I know me too! I hit snooze so many times today. It just makes me so mad. It is NOT the same thing. I can handle friends but my mom and family. That's hurtful. My husband doesn't really understand. He knows it'll pretty much always be this way and there is no cure. But he still try's to push me to do things when I just need to sleep.

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Thank you all. It's so nice to vent and talk to people who actually "get it". I can't say that enough. It doesn't matter what I do. I did try to explain to my mom and she said I need to get a second opinion!! I was appalled and just got off the phone. When you struggle for years to find out what is going on... Why am I so dang sleepy/tired 24/7, the LAST thing you do when you get an answer is get a 2nd opinion! Ugh!

And I I try to tell my friends how its such a struggle to just get out of bed in the mornings.. They say yeah, I know me too! I hit snooze so many times today. It just makes me so mad. It is NOT the same thing. I can handle friends but my mom and family. That's hurtful. My husband doesn't really understand. He knows it'll pretty much always be this way and there is no cure. But he still try's to push me to do things when I just need to sleep.

Well you may come to appreciate your husband for that in time. As annoying as it can be, since we are so sapped for energy a lot of the time, it can be helpful to have someone lighting a fire under our ass. I hear you about the friends thing; I tell my friends I'm so exhausted and cant think straight after work and they're like "yea, me too!" I wanna ask them "oh really? When was the last time you had to pull the car over on the way home because you were so stupefied by the delirium of somnolence that you forgot the rules of the road?" I know they mean well and are trying to sympathize but all I hear out of that is they're saying there's nothing abnormal with me, and I should just suck it up and deal. Like that one poster said, it's like going up to a person in a wheelchair and saying "Don't worry, I occasionally have to take a seat also! It's not so bad!" If you did that, you'd get a crutch upside your face. So why do people think it's okay to treat us PWN like that?

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Well you may come to appreciate your husband for that in time. As annoying as it can be, since we are so sapped for energy a lot of the time, it can be helpful to have someone lighting a fire under our ass. I hear you about the friends thing; I tell my friends I'm so exhausted and cant think straight after work and they're like "yea, me too!" I wanna ask them "oh really? When was the last time you had to pull the car over on the way home because you were so stupefied by the delirium of somnolence that you forgot the rules of the road?" I know they mean well and are trying to sympathize but all I hear out of that is they're saying there's nothing abnormal with me, and I should just suck it up and deal. Like that one poster said, it's like going up to a person in a wheelchair and saying "Don't worry, I occasionally have to take a seat also! It's not so bad!" If you did that, you'd get a crutch upside your face. So why do people think it's okay to treat us PWN like that?

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Yeah! I saw someone else say something about that wheelchair thing too!! I thought, wow! That is so great!! And true!!

I don't want to be bitter about this all the time! But being sleepy/tired all the time mixed with all of life in general plus you have to deal with people trying to say either suck it up and deal or I even had someone at work tell me well hey maybe I have N too b/c I'm tired a lot. Ok, I'm not saying that person 100% doesn't have N but they work overtime hrs, which I would LOVE to do but N will literally not allow me. They even drive to the beach alone which is a 4-6 hr drive! So ok! I really do NOT think you have N but by all means go see your Dr if you feel you do. Just sayin.

Anyways, I got carried away rambling about that! It's just frustrating and hurtful that family, friends and employees do not see N as a real disease that affects us in a serious way. It would sooooo make my day if my mom or another family member would just show up at my house JUST to cook dinner or do dishes or anything like that.

I want to write everyone a letter and post it on my Facebook. I saw that one that is on here in one of the other forums, but I'm looking for something a little different for Facebook. I'm getting off topic again.

Time for my afternoon meds- yippee! (Sarcasm)

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It's extremely hurtful, I know. Out of all my friends, I have 1 that has stood by me, and has really tried to understand what N is and the struggles that I go through. Truly, I think part of the issue is that sleepiness is something that everyone experiences to a certain degree, so when people say things like, "Oh man, I'm with you, I could barely crawl out of bed this morning!" Or "Yeah, I know what you're going through, I was so tired last week after this, that or the other, I could barely keep my eyes open!" We, with N, just want to shake them and scream, "NO, IT'S NOT THE SAME!" PWON cannot comprehend how we feel, because the only understand the concept of being overly exhausted for a short period of time, then they get their rest, and they feel better again.

There really isn't a great answer to how to deal with the hurt that comes from so many who misunderstand, or "poo poo" the disease as something minor. Eventually the people around you will open u and accept your N and all of its wonderful components, or you will have to accept that this is a fault of theirs, and their lack of understanding is not something you can change.

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It's extremely hurtful, I know. Out of all my friends, I have 1 that has stood by me, and has really tried to understand what N is and the struggles that I go through. Truly, I think part of the issue is that sleepiness is something that everyone experiences to a certain degree, so when people say things like, "Oh man, I'm with you, I could barely crawl out of bed this morning!" Or "Yeah, I know what you're going through, I was so tired last week after this, that or the other, I could barely keep my eyes open!" We, with N, just want to shake them and scream, "NO, IT'S NOT THE SAME!" PWON cannot comprehend how we feel, because the only understand the concept of being overly exhausted for a short period of time, then they get their rest, and they feel better again.

There really isn't a great answer to how to deal with the hurt that comes from so many who misunderstand, or "poo poo" the disease as something minor. Eventually the people around you will open u and accept your N and all of its wonderful components, or you will have to accept that this is a fault of theirs, and their lack of understanding is not something you can change.

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Yeah, I think you are right about everyone experiencing sleepiness to a certain degree. So it's not like, say epilepsy for example where everyone around you can relate to having seizures, etc.

Like I said before, this is all new to me. I do some research almost every night before bed. On here and other websites as well. Maybe with time it will get easier. But I must say, you are a better person than me. I applaud you for your patience with others around you. As well as your accepting of those that will never understand what you are going through as a PWN. I'm not so sure if I could do that last part.

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I have to be honest about my situation. I have spent my life since my extreme sleepiness began (almost 15 years ago) being called lazy. From everyone. I have had very few good friends in my life because I never had energy to do the things they wanted. What 14 year old girl is too exhausted to go to the mall?! I don't even think my family will ever believe that I have an actual problem. 

The only thing that has helped me in the situation is explaining the more serious things I have experienced. I delivered newspapers up until recently which required me to sleep a few hours before work, work, then sleep a few hours after until my son woke up. I had to tell my mom about how there were more nights than I cared to admit that I had come very, very close to losing my life from drifting off while driving and how, on those nights, even after it happened, there was NOTHING I could do to make myself more awake. Even the adrenaline rush from almost dying was not enough to keep me wide awake for more than 5 minutes. Or how I didn't even remember driving home or had to turn around all the time because I didn't know if I had delivered a paper or not because I didn't remember. At that point, I think she understood that it's not just some type of "sleep issue". 

The best advice I can give is that some people will never WANT to understand, which is much different than merely not understanding. No one really gets it unless they've been there, but as long as they TRY to understand, that counts for something. My husband and I still argue sometimes about it, but he tries to keep my condition in mind. Still, sometimes, when I really think about it, it's absolutely heart-wrenching to me that those people can never truly feel how I do or notice how the smallest things are a herculean task. I don't think that will every go away. All you can do is hope you have more good days than bad and have something to work towards and some kind of outlet. It's imperative to have people around you that take narcolepsy seriously and want to understand how you feel and to limit your association with those that don't want to put the time or effort into knowing you. Which brings to mind one of my favorite quotes:

 

“Never waste your time trying to explain who you are to people who are committed to misunderstanding you.”

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Such makes a lot of sense and I could not word such better: 

 

“Never waste your time trying to explain who you are to people who are committed to misunderstanding you.”

 

That would be a great one to have written on a card in my pocket at all times, to remind me during those rare interactions when I become fueled and deeply entangled in trying to do exactly what that says to never do.

 

The below is some venting:

This past week I had a horrible, intense, unfortunate and completely unnecessary interaction with a close sort of family friend.  She has a history (wrote a dissertation) in Psychology (need I say more!?) and she'd been a counselor, once.  She took no moment to reflect upon what she'd said/done, nor was she noting what she was actually doing; twisting and conniving.  No matter what I said, she knew everything and it was all on me (really it was pretty humorous but unfortunate as it was and may have created a wedge between my Father and I, her being the wedge); again she would not accept her own part.   Things got super twisted up as she made it some sort of 'we're out to help you' and 'we can not help if you're not willing to help yourself first'; it was total madness.  She actually made it quite clear to me, that what really matters to her, is money; that is, she kept asking me what my goals and dreams were, over and over asking me whether I agree with whatever convoluted question/s she asked, it revolved directly into money (somehow? I do not know, it made no sense) which was sick and gross (scary too)...  There were hours and hours of this mad talk, she just wouldn't let it go.  She at one point went into 'you have energy' and 'you wear that like it's a privilage' (regarding my medical bracelet that I wear for easing Cataplexy episodes in public);  I did all that I could to remediate the tensions and in the end, I left a bit early from the visit.  Not sure I can do that visit again, at least with her (being almost like a step mother) there.  It all had to do with my brother who has for years basically not wanted anything to do with them, I was almost in a way cornered into trying to take sides, by her (I'd never do such and she had no place to speak, she'd met him once like 20 years ago -sigh-).  Was very lame and definitely Drama'tic...

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