neurofibromatosis cafe

A place to talk about NF, have fun and share.

A new friend has joined us, Patricia Stokley

l_934dd3b2740501532f7c7e493f37cadd.jpgHi Reggie

I am so glad I found your web site, I have looked at several different NF websites and all I ever saw was support groups for children, not that I don’t think kids don’t need support, they do, I know how mean kids are so very mean. but adults need support also,

I do feel that I am luckier then a lot of other people with NF, most of my complications are hidden except for my speech I had to take years of speech in school, I could not even call my sister by her name, Linda, it was too hard, my tongue is deform in the back, I have a hard time hearing, I can hear noise, but so many times I just cant understand what is being said, and i know people get aggravated with me when i ask them to repeat themselves more than once, but I just cant understand, I have seizures, and there are few other problems I have I only have a few of the tumors (my mother always called them bumps) and a lot of the cafe spots (my mother called them birthmarks)

The only people in my family that has nf is my mother, myself and my daughter, we don’t know where or when my mother got it I was born with it and so was my daughter.

I do have a good life, I am 43 I have a husband who loves me, and he knows that one day I can have the bumps all over me like my mother, and he says that it does not matter to him My daughter loves me and does not blame for passing nf on to her so far all she has is the cafe spots, I do have a job but not a very high paying one, when people hear me talk they think i not that smart

But I have been wanting some sort of support group, with people who have nf, or least know what it is, when i tell people what i have they don’t have any idea what I am talking about, plus i cant say the word neurofibromatosis, nf is a lot easier for me to say I have some people ask me (who know my mother) why she does not get them removed, I even had a physicians helper at a neurosurgeon office who did not know what nf was,

It seems like so little is known about nf, but it really affects more people than what I realize, I grew up thinking it was a skin disease it was not until I started having seizures that it was the nervous system that it affected, that my speech problems were a part of my disease, and a lot of my other problems if I had only known then what I know now, may be my life would have different.
Thank you for putting your web site out there

Take Care

Patricia

September 2, 2007 - Posted by | A MESSAGE FROM REGGIE, Friend, neurofibromatosis | , , , ,

85 Comments »

  1. Welcome aboard, Patricia! I saw your post in the Gillian Anderson blog and was very happy to see a new voice responding. I hope you get as much information and support from this site as you will entertainment and fun!

    Comment by adgiant | September 2, 2007 | Reply

    • greeting in the name of our lord and savior jesus christ

      sir
      i am johnsyam a private medical practitioner (PMP in the rural area of A.P india) i have been serving the lord for teen years . at the same time AS a pastor runnig two congregations apart from feeding the perishing souls spirotually for chirst apart from the medical and spiritual work. looking after orphan childrens and hiv childrens old people we serve these childrens feeding dilly bread and clothing. the souls which are perishing need spirtual support hence am serving the lord in four aspects. that is medical pastoral. orphan. parent and old age people in charge. nowadays money HIV victims are looking forward for help through us

      so. sir. do remeber me and my service for these poor and needy people as well as HIV victims. please pray for my wife& my only son who is still in education. we are praying for you and your services.

      all the details will be furnished after your kind and favourable reply.

      MAY GOD BLESS YOU

      Comment by john syam | May 4, 2012 | Reply

  2. I know we are just building lots of friends here. Welcome aboard Patricia

    Comment by Reggie Bibbs | September 2, 2007 | Reply

  3. Hi there Patricia

    Comment by Shelley | September 2, 2007 | Reply

  4. Hi Patricia I have NF 2 but I do not let it get me down welcome to the site and hope to see you on the blog my thoughts and prayers are with you and your family

    Comment by Brian | September 2, 2007 | Reply

  5. Thanks for the comments, I guess I’ll be joinging in on the blogs too, they seem they are a lot of fun

    Comment by Patricia Stokley | September 3, 2007 | Reply

  6. I’m happy to know you will be a regular here.Welcome.

    Comment by Reggie Bibbs | September 3, 2007 | Reply

  7. Welcome, Patricia! This blog isn’t like other blogs or bulletin boards. We’re all nice people who want to share our stories and experiences, be supportive and have fun.

    Comment by adgiant | September 3, 2007 | Reply

  8. Forgot to mention, don’t believe a word Reggie says. He lies!

    Comment by adgiant | September 3, 2007 | Reply

  9. I’M not the honest man that ever lived, but all I can say is look at the record. Who would you believe? Me? or HIM! I would think you will believe me, after all we are talking about Lou. If Stanley loves me, I’m sure everyone else will too. By the way Stanley is Elena’s pet. He never gives Lou the attention he gives me. 🙂

    Comment by Reggie Bibbs | September 3, 2007 | Reply

  10. Reggie, Stanley is a dog! He doesn’t know any better.

    Comment by adgiant | September 3, 2007 | Reply

  11. Yea but what is your excuse. Wow now that was a good one. 🙂

    Comment by Reggie Bibbs | September 3, 2007 | Reply

  12. HI Everybody

    Comment by Shelley | September 3, 2007 | Reply

  13. Welcome to the group Patricia! You’ve definitely found a great place for information and support!

    Comment by Emily | September 3, 2007 | Reply

  14. Lou do you give Stanley treats ?

    Comment by Shelley | September 3, 2007 | Reply

  15. Yeah, little doggie chews in the shape of you!

    Comment by adgiant | September 4, 2007 | Reply

  16. Ok Lou One of these days one of these days. POW! to the moon!

    Comment by Reggie Bibbs | September 4, 2007 | Reply

  17. Oh yeah Lou

    Comment by Shelley | September 4, 2007 | Reply

  18. I like dogs I have 3 of them

    Comment by Shelley | September 4, 2007 | Reply

  19. what kind of dogs do you have Shelley I had a minature shnauzer but it ran a way then I also had a boxer that was my favorite she never let anything happen to me and she died I really miss my boxer

    Comment by Brian | September 4, 2007 | Reply

  20. We have a German Shepard. Very nice bog.

    Comment by Reggie Bibbs | September 4, 2007 | Reply

  21. I have a corgi {female} chihuahua {male} dachshund {male}

    Comment by Shelley | September 4, 2007 | Reply

  22. I like corgis and weiner dogs they are cute

    Comment by Brian | September 4, 2007 | Reply

  23. All 3 of mine think they have to have me hold them all the Brian lol

    Comment by Shelley | September 4, 2007 | Reply

  24. I want your corgi

    Comment by Brian | September 4, 2007 | Reply

  25. I have 2 dogs, but they are treated more like children, one is a poodle and the other is a shitz chu.

    Comment by Patricia Stokley | September 4, 2007 | Reply

  26. Shes a brat Brian

    Comment by Shelley | September 4, 2007 | Reply

  27. awe, but it is the bratiness that makes them so special, my emily (the Poodle) is spoiled, we let her pick which snack, the boy, spot (shitz chu) eats anything anytime anywere, he don’t care he just likes to eat and play fetch even at 3 am when I am sleeping

    Comment by Patricia Stokley | September 4, 2007 | Reply

  28. I’m getting ready for camp. I have a hundred things going on at one time. I will get to my emails tonight I hope.

    Comment by Reggie Bibbs | September 4, 2007 | Reply

  29. I love nice bogs. You can really tell when they really like. I can, but Adgaint can’t because they don’t like him like they like me.

    Comment by Reggie Bibbs | September 4, 2007 | Reply

  30. AW poor Lou

    Comment by Shelley | September 5, 2007 | Reply

  31. Shelley thats ok that your corgi is a brat I still want it I think they are cute with the little short feet

    Comment by Brian | September 5, 2007 | Reply

  32. Thanx Brian I cant bear to give her away

    Comment by Shelley | September 5, 2007 | Reply

  33. Reggie, you don’t know anything about dogs. You don’t know shitz chu from shinola!

    Comment by adgiant | September 5, 2007 | Reply

  34. You mean Shinola? the kind you talk everyday.

    Comment by Reggie Bibbs | September 5, 2007 | Reply

  35. Reggie go harrass Lou on the phone about 20/ 30 times an hour lol

    Comment by Shelley | September 5, 2007 | Reply

  36. Hi Patricia, welcome to the site. I don’t have NF, but my little nephew does. We’re looking into getting his brother tested too.

    Comment by Tammy | September 5, 2007 | Reply

  37. Patrica, great picture! Thank you for allowing us to post with your great letter.

    Comment by Reggie Bibbs | September 5, 2007 | Reply

  38. but Shelley I want the corgi come on you said you cant bear to give her away but I thought you had said shes a brat

    Comment by Brian | September 6, 2007 | Reply

  39. Reggie, I am glad you got the pitcure did not think it work, My daughter is suppose come over and help me with my space. I am not sure what I am doing, I can do a little programming in Access, but myspace is giving me problems, go figure glad you got it

    Comment by Patricia Stokley | September 6, 2007 | Reply

  40. Nice photo. Patricia! You should be very proud.

    Comment by adgiant | September 6, 2007 | Reply

  41. Thank you adgiant

    Comment by Patricia Stokley | September 7, 2007 | Reply

  42. She is a brat Brian

    Comment by Shelley | September 8, 2007 | Reply

  43. then I will take her come on Shelley hey whats your corgi’s name

    Comment by Brian | September 10, 2007 | Reply

  44. Her name is Heidi

    Comment by Shelley | September 10, 2007 | Reply

  45. come on Shelley I will take her even though she is a brat I wish there was a way I could see a picture of her

    Comment by Brian | September 10, 2007 | Reply

  46. Brian I sent a pic of her to Reggie

    Comment by Shelley | September 10, 2007 | Reply

  47. Shelley I got the pic of your dog but it was all black and white it looks like it did not come through my computer very good but she looks cute from what I can see I will take her

    Comment by Brian | September 11, 2007 | Reply

  48. LOL Brian

    Comment by Shelley | September 11, 2007 | Reply

  49. well Shelley if you ever want to give her away I will take her

    Comment by Brian | September 12, 2007 | Reply

  50. ok

    Comment by Shelley | September 12, 2007 | Reply

  51. Brian You could look for a corgis in the animal shelter

    Comment by Shelley | September 12, 2007 | Reply

  52. Hi, Shelley is right there are a lot of wonderful animals waiting to be adopted at shelters, usally they are already fixed. I cant remember where you live, but in montgomery co. a lot of times the ascp will go to places like petco, and the mall and just various places but you can go to a shelter just about anytime, one of the tv stations in houston is always sponsing one of those adoption events. I would give you “the boy” but my husband would cry lol, he likes to crawl up to your face, sneeze and fart, not my husband, the dog,

    Comment by Patricia Stokley | September 12, 2007 | Reply

  53. LOL how funny Patricia

    Comment by Shelley | September 12, 2007 | Reply

  54. Just to let yall know Im a very shy person I never met anybody from the internet

    Comment by Shelley | September 13, 2007 | Reply

  55. This is new for me too. Most of the time i use the net to check for movie times, maps, ect. This is my first time in a blog and my daughter help get me on to my space but it is not comming easy.

    Comment by Patricia Stokley | September 13, 2007 | Reply

  56. Patricia,

    You are do great. Sometime I have a problem with logging on to myspece. If you are able to make your post here you are doing better then what you believe you are doing. I’m happy you are keeping up with the blog. Did you see the pictures from the NF CAMP?

    Comment by Reggie Bibbs | September 13, 2007 | Reply

  57. I wanted to see Reggie get Lou good

    Comment by Shelley | September 13, 2007 | Reply

  58. Lou did you bring the Reggie voodoo dol

    Comment by Shelley | September 13, 2007 | Reply

  59. doll*

    Comment by Shelley | September 13, 2007 | Reply

  60. Yes I saw the pictures, looks like ya had a good time, do they always have horses, it has been over 20 years since i sat on a horse, i would probally be able to ride no more than an hour, old age is sneaking up on me, my body wont let me do what my heart and mind says i can lol

    Comment by Patricia Stokley | September 13, 2007 | Reply

  61. Answer to comment 58 and 59. No he didn’t I beat him up a took it. lol

    Comment by Reggie Bibbs | September 14, 2007 | Reply

  62. AW poor dolly

    Comment by Shelley | September 14, 2007 | Reply

  63. I am changing the subject cause i got great news, I do NOT have cancer, made my day, now all i need is to have the staples removed, I feel like I can shout from the mountain top, this time was very scarry, they had actully told me it look suspicous for cancer, and the biopsy came back just one of the fibromas, whew hoe

    Comment by Patricia Stokley | September 17, 2007 | Reply

  64. Patrica that is WONDERFUL! You go on and shout! I just wish we had sound. Be happy my friend. You just jump in and talk about anything. Its ok to have a different topic anyplace here. Now you can feel great and still be here to support others. I’m happy all of you are here. Thank you. All of you. Yea and you to Lou. Even you. I just feel so good to pick on Lou. Doesn’t everyone.

    Comment by Reggie Bibbs | September 17, 2007 | Reply

  65. Reggie you and Lou are so much fun both of ya need to be picked on

    Comment by Shelley | September 17, 2007 | Reply

  66. AMEN Patrica

    Comment by Shelley | September 17, 2007 | Reply

  67. to answer comment 65. Shelley no no no, Its Lou that needs to be pick on. I’m the nice guy. Right Brian? I already know you know Shelley.

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  68. yes Reggie is the nice guy that is great Patrica I am glad that you don’t have cancer that is just great

    Comment by Brian | September 18, 2007 | Reply

  69. Patrica maybe Lou is celebrating for you. lol

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  70. he must be he sure is being quiet, i know i am new here but is’nt that out of charector for him, i thought he always had something to say

    Comment by Patricia Stokley | September 18, 2007 | Reply

  71. He is swamped. He said he has lots to get caught up on. You will here from him. Don’t worry he will be back with a vengeance. Don’t let your guard down. He will be back on after he finish watching big brother. lol

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  72. sounds like he is just full of excuses he knows you are the star and WE are got your back lol

    Comment by Patricia Stokley | September 18, 2007 | Reply

  73. ok my typing is not all that good, and believe or not i am an administrative assistant, i ment he knows you are the star and we have your back lol

    Comment by Patricia Stokley | September 18, 2007 | Reply

  74. God you are good. I think Lou finally found his match. He won’t be able to take you on. lol

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  75. I must be dump, because I didn’t see anything with what you typed. If it was its not too bad that no one can understand. Don’t let your guard down. lol.

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  76. What about me Reggie You know I can harrass

    Comment by Shelley | September 19, 2007 | Reply

  77. well Shelley. Lou is back time to harrass lol

    Comment by Patricia Stokley | September 28, 2007 | Reply

  78. lol. AMEM

    Comment by Reggie Bibbs | September 29, 2007 | Reply

  79. Answer to 76. OK Patricia. Let me see. What can I say? I’m sure I can think of something.

    Comment by Reggie Bibbs | October 9, 2007 | Reply

  80. hi reggie i was so please and happy to see that they news and media as finally let the world no about nf i also i have nf to but i have type 1 im the only person in m family that has it.i am also lucky that i dont have it bad like most people.i just mostly have the headaches and i have small tumors on my arm and thousands of cafe spots. i also dont have a great paying cause when i was in school i never could passed the math part of the taas test, wich my doctors said that i will never pass cause of the nf i have tried to get my ged thousands of times and still haveing the same problems in the math area. its like i went to school for 12 years for nothing.i have always wanted to go to college and become a Child Therpist i love kids and helping them.cause of my nf i can not have kids cause the tumors that are on my rib cage has ate threw 2 or 3 of my ribs so my doctors that i might or might not can have them.iim single 30 year old female who has nf since i was 2. i have had to 2 tumors remove from back and the one on the back of head that was the size of a golfball.thanks a bunch for site cause its hard telling my friends and guys that i meet wat i have.so thanks about for u website so take care and god bless

    Comment by Catrina Jones | November 2, 2007 | Reply

  81. Hi Catria
    welcome aboard, hope to hear more from you, we have a lot of fun on this site,

    Comment by Patricia | November 3, 2007 | Reply

  82. Catrina,

    Thank you so very much for you comment on the blog. Yes I understand about the math. Math was the hardest subject. I have 2 sisters and its me and mom that have nf1

    I’m not good at math just like a lot of other things. Just as Patricia said welcome to the blog.

    Comment by Reggie Bibbs | November 5, 2007 | Reply

  83. hi

    its better than other

    Comment by pankaj | November 27, 2007 | Reply

  84. hi pankaj rawat is here. its makes whole life is good. its change my lief.i am very thank full for this kind of thinks.

    Comment by pankaj rawat 9891183381 | November 27, 2007 | Reply


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: