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Date Joined Jul 2010
Total Posts : 200
   Posted 4/20/2011 11:32 AM (GMT -6)   
Hi everyone,

I have been back here reading a lot more than I was and I feel so much closer to you all already, haven't been posting as much but more :)

I had a set of bloods done a few weeks ago for the parasites in me and trying to figure out what else is going on because I've been getting very weak and tired etc and just gone downhill, and the doctor said something weird had showed up on the results, he didn't say much about it just wanted to run a few more tests and just suspected they had mucked up. Anyway the results of the next set came back 3 days ago, I had leukaemia when I was 7 and got through it and was told i was all clear at the age of 10. It has shown up on the tests that this has come back (I have had lots of litle bruises but thought i was just knocking myself without realising but was obviously a sign i missed and was meant to look out for :| ). I don't know what to think, I honestly can't take in what he has said.. I started laughing one night thinking about it.. it feels like a joke is being played? because we had just found out that i had serious parasite infections that were causing disease so I thought i just had to treat that and maybe eventually i could be a normal teenager and complain about not having the nicest clothes or makeup! but now this I just don't know if I should keep trying with school or what to do! I am so stuck and frustrated. The doctor has referred me to an oncologist to discuss everyhting in detail so I will keep you up to date with everything. This post isn't meant to be me complaining about everything so sorry it has turned out that way I was meant to just tell you whats been happening! Anyway that's it so yeah, hope you are all going as well as possible!

love you all

xo

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 4/20/2011 1:41 PM (GMT -6)   
 
 
   Hello Buttercup!
 
         Sorry to hear of your problems and at such a young age. I'm guessing this is treatable like before?
 
      If you feel like continuing school by all means do so. Just wanted to stop and say hello to you.
 
           By the way you had a young friend who had some sort of surgery, and I cannot think of her name for the life of me. How is she doing these days?
 
         Many of the members will be glad to see you posting again too! Hang in there!
 
             Take care!
 
      SE wink
"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 4/20/2011 1:47 PM (GMT -6)   
buttercup, know this everyone is allowed to whine now and then, only those of us who have the unfortunate disease of cp know this.  i find whining to people who have walked in your shoes much more helpful than whining to those who dont there is much more empathy. one of the reasons i will continue with this forum is that very reason.  you will find not all days are whine days, but when you need a whine day this is they place to be. hoping you have many many better days and never feel quilty for those days you need to whine, it so comes with the territory.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 4/20/2011 2:21 PM (GMT -6)   
 
             Oh no my little Buttercup. I've been thinking about you lately and wondering
 
           how you have been doing. I am so sorry that this is your diagnosis. You will know
 
        more hon when you talk to the oncologist. Gosh I wish i was closer to come hug you
 
              and stay with you.
 
              How about you skype me like we use to do all the time.. My skype is always on ok
 
            Ok please call me up and if you don't feel like it an email is fine too.
 
    Prayers for you my dear friend
   I love you
   Suzane

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 4/20/2011 3:40 PM (GMT -6)   
Buttercup, please wait and see what the oncologists says...
Be hopefully that you'll beat this again, we'll alll be with you in thoughts
and many many prayers....I say continue with school, your close friends are what you need
to help you now and we'll be here rooting for you too...
((((((((((((((((((((((((((((((Buttercup)))))))))))))))))))))))))))))))))))))
well wishes, healing hugz and many many prayers

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 4/20/2011 4:01 PM (GMT -6)   
Buttercup,

I am so sorry that you are going through this. Please don't ever feel like you are complaining. I'm thankful that you gave an update, but sorry for the news. We are all here for you!

Hugs,

Flower

momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 4/20/2011 6:46 PM (GMT -6)   
Hi Buttercup. I'm sorry to hear that you have this diagnosis again. Remember, we're all here for you. ((((((((((((Buttercup)))))))))))) Please don't feel that you're complaining. All of us chronic pain patients are allowed to have those days, so come here and post whether you're complaining or whatever it is. You take care. I hope you're having a low pain night.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 4/20/2011 6:59 PM (GMT -6)   
I am still in shock hon. I will try to contact you or try me if you can. You can come and unload here

anytime, don't feel that you are complaining. We are thankful that you came here and told us.. Come back

soon, In the meantime I am saying loads of prayers for you as i am sure many members are doing the same.

We love you
hugs
Suzane

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Date Joined Jul 2010
Total Posts : 200
   Posted 4/20/2011 7:58 PM (GMT -6)   
Thankyou so much everyone for the support and prayers :) I will let you know how the next appointment goes which is next tuesday. Again thankyou so much!

Suzane I will email you today at some point or I will try and come on skype!


xoxox
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/21/2011 4:11 PM (GMT -6)   
Buttercup, i read your post yesterday, and only after reading through others realized how very young you are. i have to say you are one brave young lady(im guessing from your name you are female). i was in my early 30s when i first injured my back, i am now about to be 58.  i really gathered strenght from your posting, it makes me ashamed to even whine about mine. you should be very proud of yourself and i will think of you often, we are delt the hands we live with and can adjust to them, i dont know if i could be as strong as you when i was 15.  wow just saying that makes me feel sooooo old, but this to will pass. good luck, many gentle hugs to you, hoping you get a definate answer and feel good soon.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 4/22/2011 4:20 AM (GMT -6)   
buttercup,

My heart is breaking for you! I had Acute Myelogenous Leukemia in July of 2004 and went through 2 rounds of chemo and then had a Bone Marrow Transplant.

I know you stated in your post that you had been through this before, but I don't know how much you remember from that time since it was so long ago.

The oncologist will probably want to do a bone marrow biopsy to find out what exact type of leukemia you have. The results from that biopsy will tell them what methods to take to best help you. Remember, you have age on your side!! You are definitely a very strong young lady! I am sure that after having some time to digest what you have been and will be told that you will face treatment with your head held high and your resolve incredibly strong.

The doctors have done a lot of research in the area of leukemia(s), and their treatments get better and better. They have made great strides and every oncologist that I have ever seen really cares about their patients. It takes a special type of person to become an oncologist, I hope the doctor you are going to see is as great as what I have witnessed in the past.

I realize that you do not know me from Adam, but if you need to talk about your situation or have any questions in the future regarding your treatment that I may be able to help out with, please do not hesitate to post or email to me.

I will keep you in my prayers!
Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/22/2011 9:13 AM (GMT -6)   
 
  Dear Jess,
 
     I am so very sorry! *warm hugg* I had hoped that because we had not heard from you, that you were doing better. I am so sorry you have to fight this battle a second time in your life. You have been through so much.
 
     Please update us and let us know how you appointment went. KNow you can contact me anytime about anything. I mean that. Do you still have my email address from before?
 
     In the mean time try hard to find ways to relax and occupy your mind. You must be down right exhausted each day. Please know you are in our hearts and prayers
 
*warm huggs*
      dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Total Posts : 200
   Posted 4/23/2011 1:13 AM (GMT -6)   
Trudy - Thankyou so much for your information! I don't remember a lot from when I had it when I was younger, just the constant doctors and everyone being worried but I didn't realise why until a few years ago that it was serious, I was just acting like I had a stomach bug worse than normal! I guess not knowing kept my spirits up and didn't make me think my life was over which helped me get through! Have an appointment in a few days so I will keep you all updated on what is happening!

Dani -Thanks for you reply! I will make sure I keep you updated :) I don't think I have your email address... I'm on school holidays for 2 week at the moment - one week to go! and so have been just seeing friends and resting, and many appointments!
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/23/2011 2:35 AM (GMT -6)   
Thinking of you *gentle hugs*
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/23/2011 8:47 AM (GMT -6)   

 

   Dear Jess,

~~>  Email Me

     Save it to your address book. Also, you might want to stop by chat when you can, in the evenings

*warm hugg*
       dani



TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Date Joined Jul 2010
Total Posts : 200
   Posted 4/23/2011 8:49 AM (GMT -6)   
Thanks Dani! I will email you soon! Is anyone in chat at the moment?
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/23/2011 8:51 AM (GMT -6)   

 

  I don't know. I am usually only in chat in the evenings. I make some coffee, settle in and hang out in chat  :-)

*hugg*
   dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Date Joined Jul 2010
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   Posted 4/23/2011 8:54 AM (GMT -6)   
I'm in australia so there is a big time difference haha, what time do you normally come on and where do you live? (so I can figure out what time to come on australian time)
hugs xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 4/23/2011 9:09 AM (GMT -6)   

 

                     I've been thinking about you Jess. How are you feeling hon? How are your parents

                        taking the news? I don't know why I can't find your contact on  skype with the pic of

                      you and the horse. Can you email me your skype name. Even with your email address it

                      wouldn't work.. Otherwise just send me an email. Love you and saying lots of

                            prayers for you sweety.

 

                        Love,, Suzane xxxxxxx

 

                 


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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/23/2011 9:31 AM (GMT -6)   
Hi Suzanne, I have been thinking about you too and miss talking to you! I'm fairly exhausted and in pain but I'm okay! how are you? My parents are okay with it, Dad kind of just wanted to ignore it? But mum talked to me about it and said that b shes seen how strong I have been through everything thats happened so far and how much I push myself through everything and kept my spirits up last time and she says thats exactly what you need to beat this, and we had a talk about it of course she's pretty upset and worried, any parent would be! but I think in a few months she will see that everything is going to be fine and this will just make us stronger and even closer! :) My skype has been doing weird things and keeps freezing so not sure whats wrong with it but I will try call you when I'm on it and it's working again! Send me an email on how you are doing and whats been happening? :)

xxxxx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 4/23/2011 8:35 PM (GMT -6)   
Buttercup,
My sister was diagnosed with ALL a couple of years ago. She just finished her chemo treatments this past May. They didn't think that she would make it but she did and you will too.
At the worst, her platelets dropped down to 6 and less, she had multiple transfusions, etc, and along with the chemo, she came out the other side.
I believe that you will to. You have the most positive, can do attitude and that will take you through these next couple of months and they will become another page in the book of your life.
Hang in there and know that prayers are being sent your way. If you can get to one of the big city's around you, they can get you the most up to date treatments and programs available and then your local oncologist can follow up your treatment protocals at home to make it easier for you when you aren't feeling well.
sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

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Date Joined Jul 2010
Total Posts : 200
   Posted 4/24/2011 10:02 AM (GMT -6)   
Hi Sandy,

Sorry your sister went through that but thats so great to hear she got through it all :) I have an appoinment tuesday so will find out more then! Thankyou for your post and prayers! We have been referred to an oncologist who is apparently very good and thorough with everything so hopefully all will go very well!

xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.
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