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Thread: My brave cousins life long battle...

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    Default My brave cousins life long battle...

    My cousin Kelly has had juvenile arthritis since she was 5. Her battle has been nothing short of amazing. She has no end in sight. She is the bravest person I have ever met. If you met her you would say "that girl did not right this". Her never ending pain is obvious but she has an unbelievable spirit. Every year we have a bocci ball tournament and she plays all of the rounds.

    She never complains about the pain she is in. She has never had a job, her own money nor the sense of pride that can come from that. She has a special needs daughter and has been a single mother for 22 years. My cousin Kelly is not pretty anymore. She has deformed limbs. She has not had a real relationship since she was a teen. The odd man will use her if she allows it. She wrote this and sent it out to 5 people she thought would understand. I feel privileged she chose me. I am sad beyond belief that two people already deleted the post from their Facebook. I am sad, crying. I am trying to figure out how I want to respond.

    It occurs to me that much of what she describes is how I felt for a little more than one year pre diagnosis as well as the odd flare up ow and then. I am sharing her letter with all of you as I hope that some other people can understand her pain and her feelings. I don't want her to be alone.


    I am sorry it is soooooo long. In her defense she has held it in for 35 years









    Hey Guys,
    Well, It finally happeed. I finally had enough. I wanted to do this years ago, but I didn`t know what to say or how to do it. Someone said something on Monday and Someone posted something on Facebook that made me realize it was finally time for me to do this.
    So please read. I tried to post on facebook for everyone but its too long and it wouldn`t let me post. So its going to those who mean the most to me.
    It was very difficult, but its what I needed to say.
    Thanks,
    Kelly
    **************************


    I am tired of having to explain to people why from one day to the next, I can feel totally different than I did the
    day before.One day, I can feel AMAZING, Minimal pain, minimal nausea. Those days are few and far between at the moment,
    but they will come back. The next day I can be in so much pain, all I want to do is curl in a ball and go back to sleep till
    its all gone. Those days are what I am going through right now.


    The posts people put regarding "hidden disabilities" is not enough. People see it and think yeah yeah.
    So for those interested, This is ME, I have JRA (Juvenile rhumatoid arthritis)
    I have had it since I was 6 yrs old. I also have chronic fatigue syndrome which goes hand in hand with the arthritis.
    I also have a few other issues that are all related but those are very insignificant. I am tired of people saying to me
    "You are too young, It can`t be arthritis" Well, I am living proof that No, I a not too young.


    That means, I am in pain. EVERY DAY, Usually all day. Even when I am on my weekly injection (which I am not taking
    due to a past surgery and an upcoming surgery) I always have some dgree of pain. It can range from the annoying aches
    like you get from overworking muscles, to sharp stabbing pains like if you broke a bone. I have even had EXTREME pain,
    and I can only hope no one has to feel that. Its indescribable and my only reaction is screaming. only a few have seen
    that pain in me and I hope they never have to witness that ever again.I a also tired, Very tied, all the time. Family
    and friends think I do nothing but sleep, truth is, I average 6-8hrs of sleep in any 24hr period. It happens when I
    finally find a comfortable position that allows me to fall asleep. Many times that is during the day as I can`t get
    comfortable through the night. So please don`t think I sleep all the time. Truth is, I don`t.I sleep when my body allows me to.


    Day to day, imagine you have a muscle cramp, anywhere, an annoying pain that you rub away or take pain killer for.
    Now imagine that pain, a little stronger, in EVERY SINGLE joint in your body. Imagine that pain and ache and stiffness every
    single day, and imagine that no pain killers take it away. It just takes the edge off. OH, And add 30 pound weights on
    your wrists and ankles. Try walking across a room with that weight, ache, pain, stiffness, fatigue, and frustration. THAT is
    a normal day for me, and trust me, I AM NOT EXAGGERATING!!!


    Not just pain. Have you ever had a cast, or had a limb fall asleep and it was useless? I have had arthritis for so long (35 yrs)
    that there has been alot of damage done to my joints. That means, My hands, wrists, feet, legs, knees, jaw, neck, you name
    a joint, they DO NOT work they was yours does.I can`t stand up from a couch, walk across a room and grab a cup without help
    GETTING off that couch, somehow making my way over to wherever the cup is as gracefully as I possibly can, and grabbing the cup
    with both hands so I don`t knock it over.So usually, I stay seated and ask someone to get it for me when I have more than my
    immediate family and friends in the room so I don`t draw attention to my inability.I have to have family and friends open
    a simple bottle of pop, or a can or even a bag of crackers or chips. Right now My Dad has to tie my shoes and my daughter has
    to help me dress every morning. Its not only frustrating, its humiliating. Some days I
    can`t even EAT because my jaw is so swollen and off center, I can`t close my mouth, never mind chew anything at all.
    I get called lazy by people who don`t know me. Or stared at while they wonder Why I am walking with a limp, or crutch.DON`T
    take anything for granted.


    I am typing this with one single finger because my hands and fingers are not mobile enough at the moment to type with my usual
    3 fingers (76 words per minute with 3 fingers)and the fact my other hand is in a splint recovering from reconstructive surgery.
    Used to be fun freaking people out when I would hold up my deformed hand. The fingers used to bend backwards at a 90 degree
    angle. And I wasn`t doing it, Thats how they were bend at all times. Now they are straight so my freaking people out days are behind me.


    So there, You know why I am the way I am...right?? Wrong. I have not even started. You want to know. I have told maybe 5 people
    about what I am going to say next. Its time everyone who cares about me and is reading this, that they know the REAL me inside.
    And the nausea, I am ALWAYS nauseous to some degree. You try not to be with all the medications I have to take on a daily basis.
    Bear with me please, It is very hard for me to say what I am about to admit. But I believe it is time I came clean.


    Shortly after my beautiful daughter was born, I went into an arthritic flare up that was the worst experience of my life.
    I couldn`t move, It took me over an hour to get out of bed in the morning, and I mean literally, physically, getting up off the bed,
    not the rolling over for a few more minutes. It hurt to hold my baby girl. It hurt to care for her, to feed her. I was at my
    lowest, ever, when she was about 5 months old. I couldn`t do anything and I didn`t want to try anymore. Madison was asleep in
    her bassinet in the livingroom a friend had brought downstairs for me so I wouldn`t have to manouver the stairs.
    I was sitting in the kitchen. I had a big glass of water in front of me and ALL of my medications poured into a pile beside the glass.
    I have NO idea what the time frame was, but I do know she fell asleep in the morning. I sat there, in a daze, staring at
    the glass and the pills. I remember thinking I just wanted 1 good reason why I shouldn`t take all those pills right then and there.
    I could think of hundreds of reasons TO do it, but not 1 single reason NOT to. Then all of a sudden, My daughter woke up and let out
    a scream I had never heard before, or since. Those who know my daughter when she was a baby, know she did NOT scream,. She VERY
    rarely cried, never mind scream. That scream, followed by a wail I will never forget, Brought me back to my senses. I swept
    the pills and glass into the sink, and went and picked up my daughter. We cried together for about an hour.When I looked at the time,
    almost 3 hrs had past since I first poured that glass of water.
    I NEVER had the guts to admit that to anyone. I have told very few people this at all, And I have NEVER given all details until now.


    WHY you may ask? Because I am tired. I am tired of the questions, I am tired of the pain and frustration. I am tired of the pity
    and sympathy I keep recieveing. Don`t get me wrong, I LOVE everyone. You all give me strength and hope. But I am tired of
    making people think they need to give me pity or sympathy. I actually get asked at least once a day what I did to my hand (reconstructive surgery)
    Today, being in a fairly upbeat mood, I almost said "I punched someone in the face and broke my knuckles, they had to operate.
    I didn`t, but it mad me laugh inwardly thinking I could have, just to see the look on her face.


    My Drs told my Dad, when I was 6 yrs old, That by the time I was 18, I would either be totally cured, or in a wheelchair for the rest
    of my life. WELL, I AM NEITHER. I REFUSE to let a stupid, debilitating disease, get the better of me. I refuse to allow myself to
    accept what I can`t do. YES, These days, I am in pain. I can`t walk upright, I can`t walk without a limp, I have to rely on family
    and friends for simple things. I will not be in pain forever. I WILL get to go back on my weekly injection, that has given me my life back.
    I may have some aches and pains even then, but nothing like what I am going through now. And for those keeping count, I am waiting
    for surgery number 17, 18, and 19.


    So when you see me hobbling down the hall, or struggling to do something as simple as opening a bag of chips, Remember, The person
    you see in front of you is not the real me. The real me is a life loving, happy, outgoing, sarcastic person trapped in a body that
    doesn`t want to work the way it is supposed to. Remember that I am frustrated, and fed up with my inability to do simple things,
    BUT, I will NEVER give up. I will never let myself get to the point I was at almost 22 yrs ago.Please excuse me cancelling
    outings or changing plans litterally at the last moment. For those who know me well, I will still do many things when I am in pain.
    Its the really BAD pain or the extreme nausea that makes me cancel.


    I am not lazy. I am not making excuses, I am not asking for anything at all besides some understanding for myself, and many MANY
    others who feel the exact same way I do. Please understand I am not brushing people off, that I am not being rude, or that I am
    not being a party pooper. Please, I ask for your understanding and patience. Thats all I need, along with the love and support you,
    my family and close friends, continue to give me. I realize my life STARTED when that little baby screamed at the top of her lungs.
    Everything before that was just coping. And I don`t think I was doing a very good job at it.


    I will never be "cured" and I probably will never ride my bike again (A dream I have been holding onto for many years) But I
    know the reality. I know its never going to happen. BUT I have new goals and dreams, and even though I may be stuck behind a
    150 yr old woman driving a model T at 10 KPH on the QEW as life races by, I am still going to reach for those goals and dreams until
    I have them firmly in my grasp. With my WONDERFUL support team of Family and friends standing right there beside me.


    My daughter, Who is my life, Also has beat every hurdle in life. Born with ACC (agenesis of the corpus callossum) I was told she
    would never walk or talk. WELL, She will be 22 in June. And as most of you know, Is a Special Olympics athlete in figure skating
    and rhythmic gymnastics and has well over 100 medals and ribbons in both sports. I became a coach on her gymnastics team 5 years ago.


    So next time you see someone limping, or struggling in any way. Have patience with them. They may be fighting thier own hidden illness
    and all they want is patience and support as well. Something That ALWAYS makes me feel good, Is a random smile from someone that
    knows what I am going through. No words, Just a smile and the odd nod. A smile really goes a LONG way in the life of someone who
    is struggling. Oh...and I really like hugs too


    ...












    .




    .








    .
    lightning crashes
    leigh

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    ...smiles at her bravery...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Leigh, thanks for posting that. Here is one place where I think you can count on people reading the whole thing. My heart goes out to your brave cousin who, despite what she's been enduring all her life, is a person of great strength of character. Why she has to suffer this way is so hard to fathom, as she doesn't deserve it, nor does anyone. If I were there I'd be honored and thrilled to give her a big smile and a huge hug.

    I can't speak for other people with Wegener's, because I know some of them have a harder time than I do and I can't imagine being in their shoes. But this really puts things in perspective for me, as what I'm enduring with WG is NOTHING, not even close, compared to what Kelly must face every day. There are so many things I am able to do, and people can't tell I'm sick. I hope this will motivate me to get a better attitude about the people who "don't understand" about my illness. Why should they understand mine when they should be trying harder to understand people who are truly suffering, like Kelly? I am sick, but I'm not truly suffering to anywhere near that degree. Others with WG may have more severe issues than I, and a different viewpoint, and they are entitled to that.

    Again, thanks for posting, and give Kelly a big hug from me. And while I might not understand all of her pain, since I can't even imagine it, and I might just begin to imagine her feelings, she is NOT alone. She has made a big impression on me that will stay with me.
    Anne, dx'ed April 2011

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    You are right, Kelly is not pretty. She is stunningly beautiful. I am talking about her heart and soul of course. Thank you so much for sharing. She really takes the words out of my mouth as times. She is not alone. If she wants to come to this group she is more than welcome. WE will accept her with open arms.

    I hope you are doing well delorisdoe.
    Phil Berggren, dx 2003

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    Wow, what an inspirational person she is.

    I also have RA but never to this extent.
    Before treatment, I had days where I couldn't move my hands. Days where my fingers hurt so bad just to move them. Days where the entire hand felt like every bone was crushed by a car door.
    I still have days where it takes me awhile to stand up, if I have been sitting too long, or where my knees or legs don't seem to want to move me, but nothing like Kelly has to endure on a daily basis............not on just an, every now and then, basis.

    I couldn't imagine living with this at such a young age and still trying to every day.
    I couldn't ever imagine how I would have coped with my children, if I had to deal with this also.



    There are so many people in this world that amaze me and are so inspiring.......and Kelly, you have just been added to this list.

    Leigh, please let Kelly know that we are thinking of her and hope that she can get back to her pain relief as soon as her operations allow.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    I am thinking about directing her here to read your replies or sending copies of them to her. She is really just tired of it all.
    lightning crashes
    leigh

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    What a brave person she is! I hate that she felt like she had to hold it in for so long. But some very happy she had the courage to put that on paper and I can only imagine how much better that made her feel. Oh and how cool she shared with you! How amazing!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    she is so brave, so strong, touching. I dont have enough words to express my awe to her.
    her letter is so important. I think it is important to spread it. thanks for sharing.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    I have been in her position several times when I was in a drug-induced psychosis. The first couple times were the worst, because I didn't know if it would end. Now I know better -- I have to keep telling myself that tomorrow brings a new day. It's still tough, but at least I know things change.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    I just wanted to add that this is the first time in months I have been able to read a post I started 12 hours after I started it so Im just here to say hi before I can no longer reply to this thread.
    lightning crashes
    leigh

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