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morgan617
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:) Man, My best friend just got out of the hospital and she's got liver disease. I was there with her for 6 days, about 14 hours a day. It's fibrosis and they can't do anything for it. :) My husband is really sick and he never gets sick. He has to go to the doctor today. :P But the very worst thing of all. My baby, my son has a tumor above his knee in his femur!!!!!! He's already got juvenile arthritis, crohn's, hyperparathyroidism, severe reflux and ulcers, severe migraines, and now this!! He is all of 23. What kind of cosmic joke is this? He takes 23 pills a day just to maintain now. For God's sake, how much are we supposed to endure. I am now officially in the grand canyon. sorry guys, but this is just too much....morgan
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Guest Julia59

Hang on Morgan,

I'm sorry all this is happening---I feel for you. I'm praying that your friend, husband and son will all come out of this OK. Take a big breath and blow it out slow. Do this every so often to get your bearings. I can only imagine what it is like for you right now. I wish I had some words of wisdom, but i'm a bucket of bolts in that department.

Just remember that you are in my thoughts, and that we are all here for you.

Take things slow and even, don't over stress your body. Easier said then done, but you must listen to your body and rest whenever possible.

I wish you all the best outcome to all of this. Take care, and hang in there, better times are coming up. :):P

Julie :0)

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Morgan,

I second everything that Julia said. Also, keep in mind what a blessing and a comfort you must be to your friend who is going through such a difficult time. You are an angel, I see the halo above your head. :) I know it seems you're falling deeper into the dark canyon, but I promise there will be sunnier days ahead. I am so sorry about your son. I know you hate to see him go through so much.

Just remember to take some time for yourself to recharge -- don't feel guilty about it. I can't tell you enough how important that is. Otherwise you will not be able to provide comfort and support to anyone without taking a toll on yourself.

I'll keep you, your family and your friend in my prayers Morgan.

P.S. Because I know you have a good sense of humor and you could probably use a chuckle right now...here's a joke for the day.

There was a woman who was recently in the news because she found out her husband was cheating. One night she decided she would try to commit the "Lorena Bobbit crime" on him. The room was dark and she couldn't see very well. She missed and accidentally cut him in the lower abdomen. So the police only charged her with a "mis-da-wiener"! :P

(hope this is clean enough to post here! :) )

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Morgan,

I'm so sorry for all the trouble you and your family have. It just isn't fair, some people get it all!!!!! I wish you and your family strength (that goes for your friend as well. Hope things will be some better soon!!!

Corina

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Thanks guys, sorry about the rant, geez, doesn't it just seem like everything comes at once? Still waiting to get a call to set up a bone scan for my son. I am very impatient, I hate waiting... I loved the joke Gena! It made me laugh and as long as it's decaf, anytime blackwolf, although you may want to wait a bit, or you may get the bends.... I'll try some breathing and see if I can surface a little.... :P me breathing, just too fast morgan

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morgan,

i haven't been able to post at all today, but i saw your post and HAD to reply...

i will have to be a bit short (sorry), but i just wanted to let you know how terribly sad i feel about what is going on...it just breaks my heart. it does seem like more than one person should have to bear (i feel that a lot when i log on here...it just seems like too much happens to the same folks!).

i really don't know WHAT joa would have to say about all of this...and i've missed the whole darn season b/c i haven't been up to tv! but, we taped it! thank goodness...sorry, trying to add humor...

hey, we both do that! try to be funny in the face of horribleness....or, poopiness! :P

anyway, please let us know about jake's scan...

i am so sorry too about your dearest friend and your husband...

i just wanted to say...that i really can't tell you 'oh, it's going to be okay.' and i know i might get in trouble for this here...but i can see why some days you want to give up...i think that is completely and totally human given your situation...

but, as i thought about your post this afternoon, i realized...you MUST hold on...for your baby, for jake, for him...b/c he needs you more than ever now and you two need each other...

okay, off to beddy-bye...

love, emily

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Morgan,

I agree that it seems like it couldn't possibly get any worse, then somehow it does. But remember we are designed to somehow weather all of these hardships, and you will make it through, as will your son and husband. I am so sorry for your friend. My mom has cirrhosis and liver diseases are not pretty to watch. I hope she is as comfortable as possible and that her doctors give her good care.

Your poor son. Have his doctors tried to figure out why he has so many medical problems? Is one related to another, or is this all bad luck?

I wish I had good advice for you. I'd rent a very funny movie and sit down with your friend and your family and all of you watch it. It eases the pain.

Amy

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Guest tearose

hey morgan, I hear you! This sure is a heavy load you are carrying. Please keep telling us what is going on and do something to keep up your strength.

When life seems to give me more than I can manage I tell the universe to send me the energy to handle it or I'm gonna get really mad!!! Funny thing is, somehow the universe seems to hear me and I find I somehow do manage! Let us share the load with you! Does your friend have a good doctor for the liver disease? Is hubby on the mend yet? How is your son holding up?

How are you???? What one thing did you do for morgan today??? You must carve out 20 minutes for you! please!

with you on the journey, tearose

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Morgan, the only thing I thought when you said you were in the Grand Canyon is "I hope she can at least enjoy the view" :o sorry, not the greatest thing to say, but since we're in the hole together, we can look up and find something nice to focus on.

It's crazy how just when you think "I can't handle another thing", yet another think lands KERPLUNK upon your plate. That must be in the dictionary somewhere listed under "irony."

Hang in there Morgan. Nina

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I read a little booklet once written back in the 1935 by Emmet Fox called the 7 day mental diet and it had this line in it about 'Suppose your whole world seems to rock on its foundations. Hold on steadily, let it rock, and when the rocking is over, the picture will have reassembled itself into something much nearer to your heart's desire."

I'll keep a good thought that your picture will soon reassemble much in this same fashion.

EM

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Morgan, how are you and those you love tonight? Did your husband get any meds today to cure what ails him? (What's going on w/him? I hope he's on the mend soon... ) I'm sorry to read about how difficult things are for you; I know you haven't been feeling well yourself, and these hardships your loved ones face are wearing you down further. When will you know a course of treatment for your son? It must be hard to see him go through all this; I hope he's able to keep a positive attitude through it all. You too! We're all with you; keep us posted, OK?

Best,

merrill

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Oh Morgan, I don't know you that well like the others but I can sure send warm prayers your way. All we can do in moments of total dispair is let others hold us up in our weakest of times. Feel our warmth and prayers and let us stand in the gaps for you. It is during the times when we are too distraught to pray that we have to let others do it for us. Let us know about your son's test. I am very familiar with tests and tumors and femurs and thinking that life can't get any worse. I will prayer for a benign result.

I survived cancer to only discover I had POTS but I'm still here and kicking. Your son will get through because of your and your families love and so will you. It will a get better. Hang on!!!!!!!!!!!!!!!!

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Thank you all so much. Nina, Here's a little funny. A long time ago I got to go see the grand canyon and all I saw everywhere were signs saying there was a rabies outbreak! :o Put a bit of a crimp in things... My son has a form of arthritis that is genetic and he inherited it from his dad, although not one single person till Jake was ever diagnosed with it, so I think I must have a recessive gene somewhere that connected. Part of this type of arthritis also causes inflammatory bowel disease, which he unfortunately also got. The parathyroid problem is malabsorption due to the crohn's. This type is progressive and there is no cure. All of his vertebra will eventually fuse and he will become immobile. From the spine aspect. He has a 70% chance of needing hip replacements before 30. His left SI joint is already fused and his sacrum too. He's been sick since he was 10 1/2. It also can cause aortic valve prolapse and severe lung problems as he has scoliosis, and lordosis. He has no curve at all in his lower back. It can also cause blindness from recurrent iritis. I naturally assumed when he told me his knee hurt, he was getting arthritis there too. So we were completely blind sided by this news. It was like hearing he had arthritis. Who ever thinks their 11 year old will get arthritis? He is the sweetest and most gentle soul you could ever meet. How ever he is a boy and now thinks he really is going to die a virgin, because no one could ever love him, especially if he lost a leg on top of everything else. So my heart is just completely broken. And you want to know the real kicker? The doctor calls at 10:30 at night to tell him, I get on the phone and she wants to know why he's so upset!!!!! Good grief! I have no idea what's wrong with my hubby. We took some samples in and they drew blood. He may have a colonoscopy next week. He has had a little trouble since his chole. Emily, you may understand that. But his doctor doesn't think that's what it is. We just have to wait for the test results. As for my friend, all I can do is be there for her, but it's so hard. Tonight I was trying to talk to her on the phone about Jake (my son) and she said she had to hang up right in the middle of it, because she was waiting for another call. Kerslap.... I'm sorry, I'm so brain dead, someone asked what I had done for myself. I can't remember. I just got cranky I guess. This is sort of where the rubber meets the road you know. You find out who your friends really are, and if anyone really understands what is going on with you. It's a little disheartening to realize they are people on a website that you will never meet. You appreciate them more than any of them could EVER know, but it's not like the person that can sit next to you and hold you and tell you they understand and you know they do. I really don't know where I would be if not for all of you and I appreciate you so much :o So please don't misunderstand what I am saying. I maybe a lot of you will know what I'm talking about. Jake has his bone scan on Thursday, it was the soonest they could get him in, but I told her they had better have the results on the doctor's desk by Friday morning, because I wasn't going to wait all weekend. She wrote that down. So that's where we are. I so appreciate all the prayers and support. I will keep you updated as I can. morgan

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Guest tearose

Hey Morgan, my brain is foggy but I still am here and listening. Wish I knew the way to make this all resolve in a good way for you and hubby and friend and especially for that darling son! It seems like such a heavy load. My goodness morgan, all I can do is let you know I am here.

That was insensitive of the doctor...what was she thinking? How can people be so self absorbed? Especially after delivering such news...unbelievable.

I know very little of all these problems you are helping others with. I do know that this added burden will only wear you down sooner or later IF you aren't real careful. I am guilty of asking you what you did for yourself. It is because I know from experience with far less than this burden that you carry, that we can give to excess if we are not careful! Please just know that you are an important part of your family circle and they need you to be able to be honest with your limits. So know your limits. Ask for help from others if possible. Be assertive. You can even call that doctor back and tell her what she did was incomplete/inappropriate and you would like to have some more time talking with her. Whatever you must do to make peace for yourself, do it.

I hope there will be some good research and treatments that will happen soon to improve the lives of these special people.

with compassion, prayer and sitting beside you, tearose

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Morgan,

I was thinking that we have whats called "an orphan disease'. The amazing thing about all of this poo that happens is that we do find a way in the meantime. I will pray as always for strength and peace for your family. I also have found that humor any kind sick, cartoons, comedy central, humor helps alot. Perhaps all of you could rent a ovie for each day, that way each can find a piece of floor or furniture and take an emotional break. If there is anything I can do let me know. I am not to good with the dirt, digginf isn't my thing but if I know when I'll find a way to have decaf with you all. Miriam

P.S. Has your son been involved with theh juvenile dibetes assoc? They have wonderful programs, camps etc. I worked for them and was a counselor. I can tell ya that lots left with smiles :)

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As most of you know I do love a good joke and and a good sense of humor. I have watched a few movies, but it's hard for me to sit still for very long due to pain issues. Miriam, I haven't gone to the diabetes site, as Jake has arthritis and that's about all I can handle, but I do know there is very little info about juvenile arthritis, and what little there is deals with Rheumatoid, which he doesn't have. I have had to get about 99% of my info on my own. I used to subscribe to a ja magazine but all it dealt with was rheumatoid also, I got so mad, I sent them a zinger letter and cancelled. I am such a "Babe In Total Control of Herself" (put the capitals together and you"ll get my drift. ) Jake has seronegative spondyloarthropathy. Say that fast three times. :) There is very little info on it because all they work on are the genetic components as opposed to how to fix it. His doctors all hate me as I keep up as best I can and they don't like that sometimes I may know more than they do. BooHoo. And yea to call that late at night and then wonder why he was upset was sooo weird. But there are no doctors in my town that have a real grasp on childhood onset and dealing with it into adulthood. Therein lies the problem. At least she really looked at the x rays and is following up and I have to give her credit for that. I couldn't say that about every rheumy he's seen. Man I do go on. Sorry. Your responses have really overwhelmed me and mean so much. I'm having my decaf and you are all here in my heart!!! morgan

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Morgan,

I don't believe the "God doesn't give us more than we can handle" bit. I think he has definately overloaded you and it's not fair. Sometimes my anger is all I can rely on to get me through these kind of situations. If I get angry enough I get energy, of course when the crisis is over I pay by being too sick to function. I'm so sorry to hear about your son. What doctor would call at that hour? Like you're going to be able to sleep after a call like that. How inconsiderate! Our kids being sick is the worst. You have so much on your mind, and being a nurse is a curse because we always imagine the worst. Sorry about your husband, hopefully he will be OK. Wish I had something to say that would make you feel better. You're in my thoughts and prayers.

Nurse-Curse never realized they rhymed.

I wish we could drink, a good happy hour would at least put a bandaid on for a little while. :)

Dawn

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Brain fart I meant juvenile arthritis foundation. I do know about your sons diagnosis. I have been on the national board for arthurs found. If you need any info I can get or tell toy where to get. Advocates come from all corners. Whwere do you live? The good thing about movies is that you can start and stop them, and move around. My fav is Grumpy old men!!!!!!!!!!!!!!!!!!!!!

Peace Miriam

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