Update on my best friend

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Update on my best friend

Postby angie7 » Mon Mar 17, 2008 1:40 pm

I posted on here several months ago about my best friend having leukemia, but turns out she was misdx. Well she finally found out what she has, and I couldnt spell it if I tried! It is a very rare, terminal, progressive disorder within her blood/bone marrow/cells (not sure how it all works, very confusing!)...It continues to spread to her organs and once it goes to her lungs or heart, it is fatal. Her doc said that could be a matter of days or years, no one knows :cry:

Also it is causing her internal organs to hemeorage (sp?), right now she is bleeding from every hole in her body, her ears, nose, mouth, etc. She just recently discovered that she has 3 huge bleeding ulcers in her colon and is awaiting a biospy result next week to see if they are cancerous or not.

She goes for her court hearing tomorrow (for the 2nd time) for her disability. Please send good vibes that she will pull through all of this and get SSD which she so badly deserves. She has no medical insurance and is unable to get any b/c of the cost of being a breast cancer survivor....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby Janice » Mon Mar 17, 2008 2:21 pm

Hi Angie,

I will keep your friend in my thoughts. It truly sounds like she is very deserving of SSDI.

Thanks for the update and I'm so sorry to hear that she is battling with this illness.

Take care,
Last edited by Janice on Tue Mar 18, 2008 10:34 am, edited 1 time in total.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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Postby dtyree » Mon Mar 17, 2008 6:33 pm

Dear angie7. Your post really tears at my heart. I hate very much to see other people suffer, and especially you best friend. I do thank you for posting this to let us know. She is really going through a lot of unpleasant things right now.

You possess an inner strength, probably unlike others. It is that power that comes from within that sustains your life, keeps you going and helps overcome the obstacles in life that may come your way.

Hold your friend for me and you. Let her feel the strength of life come from you into her to help with her healing. Let her know that several folks here are thinking about her well being constantly. It is my dearest hope that she receives a stronger body for her to continue with that which she does and wants to do. Let her know even more, of the love of your friendship with her. You are strong and this will help her sustain what she must.

May all the joy, love, strength and peace of this world be yours to share with your closest friend.

David
Been called a "walking medical dictionary".
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Postby angie7 » Mon Mar 17, 2008 7:32 pm

Thank you David, that was a wonderful thing to say....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby cash71 » Mon Mar 17, 2008 8:18 pm

Angie, I don't even know what to say. What an awful thing to have happen to your friend. I'm so sorry to hear about this diagnosis. I remember you posting originally about her and I can't believe your update. You and your friend are definately in my thoughts and I'm sending all the good vibes I can muster your way.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby ke4uzj » Mon Mar 17, 2008 8:41 pm

She is in my prayers
it makes me so mad that they would not just willingly hand over ssdi to her . others are out there (my brother in law) who are getting it just because he is lazy , and doesn't want to work but gets ssdi because he stutters (which he has done for 57 years and worked until he was 55 without a problem)
please let me know how her hearing goes .
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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Postby Snoozie » Mon Mar 17, 2008 8:47 pm

Angie, I will be thinking positive thoughts for your friend. I will be hoping and praying for her to get the help she needs...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Postby georgiagal » Mon Mar 17, 2008 10:08 pm

Angie -- Lots of good thoughts & prayers are headed your way from Georgia!

GG
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Postby Sandy » Mon Mar 17, 2008 10:37 pm

ANgie,

Your friend is lucky to have such a caring and loving person like you for a friend. I'll be sending lots of good thoughts her and your way.

Let us know what happens. This sounds like a terrible thing she's been dx with.

love,
sandy :D
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Postby streetsense » Mon Mar 17, 2008 11:11 pm

Angie,
I am hoping fervently that the hearing officer considers it most important to protect your friend and aid her in her pursuit of health care and support that she needs.
streetsense
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sleep apnea
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Postby angie7 » Tue Mar 18, 2008 8:53 am

Thank you all for your kind words. This has been so difficult to accept and she is so depressed that all she talks about is death. I try to remain a positive person in her life, but some days it is so hard to do. I know that she just needs a shoulder right now, and that is what I am. She lost her mother to another rare blood disease a few years ago and she is missing her mom alot right now too. She doesnt have much family.

HC-no thats not what it is, it starts with an S (I do know that) She cant even pronounce it!

Today is her hearing, I SOOOO hope she gets it. If she doesnt, there is a HUGE problem with the system. I will keep you posted when I hear from her today. I'm half expecting them to approve her today.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby lori1218 » Tue Mar 18, 2008 9:35 am

Dear Angie:

I am so sorry to hear about your friend..Surely, I will be keeping you both in prayer..She is lucky to have a friend like you.

It seems criminal that this poor woman has to actually go to an SSDI hearing...she is 110% deserving and in need of this..She paid into the system....and now she needs help...oohhhhhhhhh...it must be so mind-boggling for her..

Take care , ANgie.

God Bless,
Lori
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Postby angie7 » Tue Mar 18, 2008 1:56 pm

HOORAY!!! She got approved on the spot! <insert happy dance icon here> I know she is relieved, but the first comment out of her mouth was "I hope I live long enough to enjoy it" :cry:
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby Janice » Tue Mar 18, 2008 2:21 pm

HOORAY!!!! That's right because she deserves it.

As Lori mentioned, they should not have even wanted her to appear in court. They make you come to court but they don't think you're disabled if you go to church. Odd!!!

Take care and tell your friend I said CONGRATULATIONS!!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby ke4uzj » Tue Mar 18, 2008 2:40 pm

i am sooo very happy for her...if anyone deserves it , she does.
just be there for her, she is going through the steps of acceptance and she has to get there her own way . i will keep both of you in my prayers

lots of love,
patty
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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