Saturday, April 10, 2010

TAKING ACTION (23 week old)


For me, one of the most challenging aspects of Cutaneous JXG is dealing with the feeling of powerlessness over this condition. Once the biopsy results come back and the doctor explains what it is and says: “we are going to keep a close eye on it” (meaning a follow up every 3 month with him and another one with the ophthalmologist), we think: “that’s it?. It can’t be”. So, most of us get home and launch into the internet to conduct our own research. After we absorb tons of info to the point that our brains become like mushrooms and we confirm that the doctor was right, we are still not satisfied. Now we look for a 2nd, a 3rd and even a 4th opinion! Besides some differences in tests (some doctors order more than others), they all tell us the same: “Wait. Be patient. It will go away in a few years” and this time our inner voice whispers “easier to say than to do”. After I posted a few articles on this blog, many of my dearest friends asked how they could help? What they could do?. Besides telling them to donate money in honor of Santiago to the Histiocytosis Association of America or the Histio Heroes Research Fund I did not know what else to offer. At that point that was the only thing I did but I knew it should be more. The last couple of weeks I searched other organizations and I discovered many other ways to fight back. I was ecstatic to see that so many people around the country are working very hard to find a cure and that I did not need to re-invent the wheel. I just needed to create a place where all these wonderful ideas could be easily accessed and this is how the “Take Action” section of the blog was born. As indicated there, some of these avenues do not take more than two minutes and many of them are free. I have tried all of them and even though some have not paid back yet, they made me feel empowered and not alone. I understand that all these efforts will not have a direct impact on my baby’s condition but they will help someone else's child in the future and that is a great sensation to have. In those days when it is obvious that impatience is winning the battle, my husband says: “Remember babe, a watched pot never boils” and a smile is drawn in my face immediately. Hopefully, by taking part in some of these efforts, we will not feel like the JXG pot takes forever to bubble.

57 comments:





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    8. have be married for nine years my husband and i where living happily and just two months ago my husband ment his ex girl friend whom he had in school days and all of a sudden he started dating her again and he never cared about his family again all he does is to stay late at night and when he come's back he will just lie to me that he hard some fault with his car,there was this faithful day i caught the both of them in a shop,i walked to them and told the girl to stay of my husband girlfriend again,i have suffered too much in the hand of a cheating husband but and when he came home that evening he beat me up even despite the fact that i was pregnant he was just kicking and warning me to never point a finger on his affairs. thank to ancientokija whom i got from a blog site after a long search for a real spell caster i was so happy that he fufilled all what he said in just less than three days after the spell was casted they quareled and he broke up with the girl and his senses are fully back and he now care and love me like he have never done before and if you are their suffering from a broken marriage or your husband or ex cheats? you can email (drokosunspellhome01@gmail.com) his spells are pure and very powerful without any doubt. or call him.whatsapp number +2349061515609. he is the best caster that can help you with your problems

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    10. I want to thank Dr Emu a very powerful spell caster who help me to bring my husband back to me, few month ago i have a serious problem with my husband, to the extend that he left the house, and he started dating another woman and he stayed with the woman, i tried all i can to bring him back, but all my effort was useless until the day my friend came to my house and i told her every thing that had happened between me and my husband, then she told me of a powerful spell caster who help her when she was in the same problem I then contact Dr Emu and told him every thing and he told me not to worry my self again that my husband will come back to me after he has cast a spell on him, i thought it was a joke, after he had finish casting the spell, he told me that he had just finish casting the spell, to my greatest surprise within 48 hours, my husband really came back begging me to forgive him, if you need his help you can contact him with via email: Emutemple@gmail.com or add him up on his whatsapp +2347012841542 is willing to help any body that need his help. 

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  2. ​This is the most wonderful thing i have ever experienced. I visited a forum here on the internet on the 17 APRIL 2016, and i saw a marvelous testimony of Tracie Aldana from United States on the forum about the good works DR OSEMU. I never believed it, because have never heard anything about such miracle before. No body would have been able to convince me about it not until DR OSEMU did a marvelous work for me that restored my marriage of 4 years by getting back my divorced wife just as i read on the internet. Am Brooklyn Gray from USA. I was truly shocked when my wife knelt down pleading for forgiveness to accept her back. I am really short of words to use to show my appreciation to DR OSEMU. For his a God sent to me and my entire family for divine restoration of marriage. Contact him now for any kind or help via Email: Doctorokpamenspelltemple@hotmail.com OR call and whats App him on +2348135254384. You can text/call me also for more inquiries +1 (914)-902-7078.

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  3. i am here to give testimony of how i got back my husband, we got married for more than 9 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come home again and he called me that he want a divorce, i asked him what have i done wrong to deserve this from him, all he was saying is that he want a divorce that he hate me and do not want to see me again in his life, i was mad and also frustrated do not know what to do,i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just want to try if something will come out of it. i contacted Zuma Zuk for the return of my husband to me, they told me that my husband have been taken by another woman, that she cast a spell on him that is why he hate me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they casted the spell and after 1 week my husband called me and he told me that i should forgive him, he started to apologize on phone and said that he still live me that he did not know what happen to him that he left me. it was the spell that he Zuma Zuk casted on him that make him comeback to me today,me and my family are now happy again today. thank you Zuma Zuk for what you have done for me i would have been nothing today if not for your great spell. i want you my friends who are p***ng through all this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact spiritualherbalisthealing@gmail.com or call +2349055637784. and you will see that your problem will be solved without any delay.

    ReplyDelete
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    ReplyDelete
  5. I have been in marriage for 13 yrs with no child of my own and my husband loved me so much that he never do things without me. We do almost everything together and that made my marriage so romantic and interesting for me but i have always worried about having my own kids even if it's just one. My husband never seem to be worried or talked about it and it bothered me so much. I am really short of words of what happened later but i will try to put it in a short note because it's my greatest joy on earth. Few years back my husband fell into the hand of a gold digger who tried to take him away from me. This lady manipulated my husband and he took her side and left home to stay with her for almost a year i was alone crying day by day waiting for him to call me and come back home until it got so bad that I couldn't bear it anymore and i was about giving up on him because of these online Fake spell casters and Scams who rip off my money. This is certainly a shocking and genuine living Testimony of mine and it does goes on right now in my life. I came across some suggestions and i was convinced to work with this man after i expressed what i have been passing through to DR MUNA. He told me what i needed to know and requested for an ancient items he needed to work for me I cant get those items myself and i sent him some money for him to help me and hoping this is another Scam. But when DR MUNA called me and told me he is done with my work. My husband came back home with a surprised apology gift. I had him back and right till this moment we have loved each other again more and more and i am 6 months pregnant and i will be having my third child soon. This is an extraordinary blessing and to all soon to be a mother I am telling you nothing but my true life story and here his email ID marvelspelltemple@gmail.com Whatsapp contact +2348071660388

    ReplyDelete
  6. I recently saw a testimony about a spell caster of some sort in a blog I visit for relationship and dating counseling problems because i had been having serious issues with my husband and we had been married for 3 years,he just suddenly changed, he was returning my calls ,he started cheating, he was hurting me in so many ways i never thought possible and I just thought I should try it maybe out of desperation of some sort ..and I think for a thought about the spell caster called DR UGO WONDERS I contacted him At first everything felt dreamy and unbelievable, their consultations and solution was a little bit easy and strange and I was scared a little cos I heard read and heard lots of stories of fake spell casters, scams and i never really believed in magic.. I played along with a little hope and and faith and I was sent some few stuffs after everything and it worked like a miracle, everything went to a while new direction, I guess it was all good faith that made me read That particular post that faithful day.. I hope they could help other people too like they did a little and I got everything I wanted and wished for my husband, my family and my life back to contact the DR UGO WONDERS through is email and cell number at :::  generalspelltemple@gmail.com or his mobile number on +1 386-336-9876 

    ReplyDelete
  7. Hi everyone, i am Chloe Raymond am so glade coming back to this great forum to testify about the help i received from Chester Brian. I was in desperate need of a loan in other to be free from debt and financial bondage that was place on me by my ex husband. It was really bad that i have to seek for help from Friends,family and even my bank but on one could assist me because my credit score was really bad. So i was browsing with my computer and saw some testimonies from people Chester Brian assisted with a loan, then i decided to contact him on his email BRIANLOANCOMPANY@YAHOO.COM, then i received a mail from them and i did all that was asked from me. To my greatest surprise they transferred to my account the loan i requested and now i am so happy clearing my debt and have also started a business with the remaining amount to take care of myself and family. If you need a loan do contact the best loan lender of all time Chester Brian on his email: BRIANLOANCOMPANY@YAHOO.COM or Call/Text +1(803) 373-2162

    ReplyDelete
  8. I wake up everyday with a smile on my face and singing praises to this powerful spell caster called Dr,Okaya who has done me a great favor by rescuing my relationship from break up. I used to think that i have a perfect relationship till when my lover started coming home late and everyday he gives me different excuses then i decided to keep a close eye on him then i discovers that he was having an affair with another Woman, I was heart broken because i trusted him so much and knowing that he has a secret relationship, hurts me a lot.. But i thank all those who placed the contact information of Dr,Okaya on the internet because through that i have been able to contact Dr, and today my relationship has been restored with love and more Respect than ever before. If you are in any kind of relationship or marriage stress i will do you a favor by dropping the contact information's of Dr,Okaya which are via email: OKAYASPELLHELP@GMAIL.COM ... OR call Him on his number +27814506790

    ReplyDelete
  9. I wake up everyday with a smile on my face and singing praises to this powerful spell caster called Dr,Okaya who has done me a great favor by rescuing my relationship from break up. I used to think that i have a perfect relationship till when my lover started coming home late and everyday he gives me different excuses then i decided to keep a close eye on him then i discovers that he was having an affair with another Woman, I was heart broken because i trusted him so much and knowing that he has a secret relationship, hurts me a lot.. But i thank all those who placed the contact information of Dr,Okaya on the internet because through that i have been able to contact Dr, and today my relationship has been restored with love and more Respect than ever before. If you are in any kind of relationship or marriage stress i will do you a favor by dropping the contact information's of Dr,Okaya which are via email: OKAYASPELLHELP@GMAIL.COM ... OR call Him on his number +27814506790

    ReplyDelete
  10. ALL THANKS TO UPSTART LOAN AM NOW FINANCIALLY STABLE . upstartloan@yahoo.com
    I am Michelle Huxford from Casper, Wyoming. I was in a very chronic financial issue and terminal health situation some few weeks back. After all my search for assistance from friends and neighbors proved abortive, I feel there was no one who truly cares. I became so emaciated due to lack of good food and my 2 kids age 5 and 8 were not also good looking due to lack of proper care as a result of finance. One faithful morning I saw an old time friend of my late husband and I told him all I have been going through and he said the only way he could help was to direct me to a good loan agency that also helped him, He explained to me on how he was financially down and how he got boosted by this loan agency UPSTART LOAN INC ( upstartloan@yahoo.com ) who grant him 245,000 USD loan at an affordable rate. He further assured me that they were the only legit loan firm he found in the quest of seeking for loan after been scammed by various fake loan lenders online. He gave me their email: upstartloan@yahoo.com or text/call (574) 301-1639, That was how i applied and was also granted a loan and my life changed for the good. CONTACT THE ONLY GENUINE LENDERS( UPSTART LOAN INC) VIA email: upstartloan@yahoo.com or call +1 (574) 301-1639 to resolve your financial mess.

    ReplyDelete
  11. I want to give an unlimited thanks to this Great man Called Dr. Okaya. I am happy today because my husband is now back with full of love, My husband left me for another woman,just because we had a little misunderstanding. he left me and promise he will never come back to me again. i cry all day looking for a solution to help me bring him back. Then i saw a testimony share on the internet by client. i email him and tell him my problems with my ex husband, and he promise to bring him back home within 2 days. indeed he is wonderful he help me to get my husband back within 2days which he promise and my husband return to me and promise to love me forever and beg me for the pain he caused me. I will forever be grateful to you Dr and i will not stop to publish your name on the internet for people to see how truthful you are. And I want to say to everyone on this site that I will always remain thankful to this man Dr. Okaya for all he has done for me,My husband is back with love,caring,truthful and he promise to love me forever.I have made a promise that every body I know will never have a relationship problem, via email (OKAYASPELLHELP@GMAIL.COM Or call/Whatsapp +27814506790,Here is Dr Okaya blogger Link: OR His website : https://okayaspellhelp0.wixsite.com/website

    ReplyDelete
  12. How I Got My Loan From A Genuine And Reliable Loan Company

    My name is Mr Mohammed. I live in Oman and i am a happy MAN today? and i told my self that any lender that rescue my family from our poor situation, i will refer any person that is looking for loan to him, he gave me happiness to me and my family, i was in need of a loan of $150,000,00 and was scammed by those fraudulent lenders and a friend introduce me to MR IBRAHIM MUSA,and he lend me the loan without any stress,you can contact him at (creationfinance7@gmail.com)

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    WhatsApp Number +919717357946

    ReplyDelete
  13. Hello everyone, i don't just know the reason why some people is finding it difficult to believe that there is a cure for Herpes Disease, i have been Herpes since last three years but today i am happy that i am cured from Herpes with herbal medicine of Dr Haberle the great healer,i was browsing the internet searching for help when i came across a testimony shared by someone on how Dr Haberle cure his Herpes i was so much in need of getting his treatment but after all Dr Haberle brought a smile to my face with his herbal medicine. i am so much happy today that we have someone like this great healer out there, so my people out there kindly contact this great healer on his email address: drhaberlespelltemple@gmail.com or drhaberlespelltemple@yahoo.com please sir keep your good work cause there are people out there who is in need of your healing medicine.once more contact him now or his Whats app Number:+27643508906.

    ReplyDelete
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