Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Dear Ursula: We now have been at this ten years. We have filed medical bankdruptcy once. I am afraid to file SSI it is just a battle everytime that we need to re-authorize any new procedure or retain treatment. We also need a family counselor but cannot afford to pay for one. We prioratized what is necessary at the given time. What you have said rings true on all accounts. I welcome the family trip to Pittsburgh in a few weeks so we have a break from everything here. I pray daily for a normal life like everyone else but does not seem to be in His plans. Take care and let me know how it goes. Maybe I will be brave enough and apply also. Sincerely, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: honeymoon phase >Date: Sun, 20 Jun 1999 22:07:10 -0400 > > > >Many members of the list have filled out the survey form and I know from >other responders that quite a few people are still in what I call the > " honeymoon phase " . You're still getting use to this new diagnosis and >while >you're happy that something was finally narrowed down about why your child >was staying ill, it still hasn't completely dawned on you that this is a >full time disease. Chronic should be known as a four letter word or at >least one that can't be said in polite company. > >December will be the 2nd anniversary of Macey's diagnosis. Since then >because she's still a toddler we've wavered on exactly what she has. I >still think that until she's 6 or 7 they won't say that it's lifelong. >Testing has been done, illness has been overcome, appointments are kept and >infusions are scheduled. Day in and day out we explain, console, think, >brainstorm, research and pray our lives away. It has taken two years for >us >to admit that maybe it's time to apply for disability. 8 months ago the >immuno told us to, but we were in denial. Bills come in and they're >prioritized. Who must get money, who'll wait for money and who do we see >again soon. > >I honestly believe the honeymoon will be over and reality will set in when >Macey's old enough to start asking questions. Until then we'll pray >alittle >more, learn alittle more and love alittle more. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > > > >------------------------------------------------------------------------ >Congratulations to " PAFind, " our latest ONElist of the Week. >http://www.onelist.com >How is ONElist changing YOUR life? Visit our homepage and let us know! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Dear Ursula: We now have been at this ten years. We have filed medical bankdruptcy once. I am afraid to file SSI it is just a battle everytime that we need to re-authorize any new procedure or retain treatment. We also need a family counselor but cannot afford to pay for one. We prioratized what is necessary at the given time. What you have said rings true on all accounts. I welcome the family trip to Pittsburgh in a few weeks so we have a break from everything here. I pray daily for a normal life like everyone else but does not seem to be in His plans. Take care and let me know how it goes. Maybe I will be brave enough and apply also. Sincerely, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: honeymoon phase >Date: Sun, 20 Jun 1999 22:07:10 -0400 > > > >Many members of the list have filled out the survey form and I know from >other responders that quite a few people are still in what I call the > " honeymoon phase " . You're still getting use to this new diagnosis and >while >you're happy that something was finally narrowed down about why your child >was staying ill, it still hasn't completely dawned on you that this is a >full time disease. Chronic should be known as a four letter word or at >least one that can't be said in polite company. > >December will be the 2nd anniversary of Macey's diagnosis. Since then >because she's still a toddler we've wavered on exactly what she has. I >still think that until she's 6 or 7 they won't say that it's lifelong. >Testing has been done, illness has been overcome, appointments are kept and >infusions are scheduled. Day in and day out we explain, console, think, >brainstorm, research and pray our lives away. It has taken two years for >us >to admit that maybe it's time to apply for disability. 8 months ago the >immuno told us to, but we were in denial. Bills come in and they're >prioritized. Who must get money, who'll wait for money and who do we see >again soon. > >I honestly believe the honeymoon will be over and reality will set in when >Macey's old enough to start asking questions. Until then we'll pray >alittle >more, learn alittle more and love alittle more. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > > > >------------------------------------------------------------------------ >Congratulations to " PAFind, " our latest ONElist of the Week. >http://www.onelist.com >How is ONElist changing YOUR life? Visit our homepage and let us know! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Dear Ursula: We now have been at this ten years. We have filed medical bankdruptcy once. I am afraid to file SSI it is just a battle everytime that we need to re-authorize any new procedure or retain treatment. We also need a family counselor but cannot afford to pay for one. We prioratized what is necessary at the given time. What you have said rings true on all accounts. I welcome the family trip to Pittsburgh in a few weeks so we have a break from everything here. I pray daily for a normal life like everyone else but does not seem to be in His plans. Take care and let me know how it goes. Maybe I will be brave enough and apply also. Sincerely, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: honeymoon phase >Date: Sun, 20 Jun 1999 22:07:10 -0400 > > > >Many members of the list have filled out the survey form and I know from >other responders that quite a few people are still in what I call the > " honeymoon phase " . You're still getting use to this new diagnosis and >while >you're happy that something was finally narrowed down about why your child >was staying ill, it still hasn't completely dawned on you that this is a >full time disease. Chronic should be known as a four letter word or at >least one that can't be said in polite company. > >December will be the 2nd anniversary of Macey's diagnosis. Since then >because she's still a toddler we've wavered on exactly what she has. I >still think that until she's 6 or 7 they won't say that it's lifelong. >Testing has been done, illness has been overcome, appointments are kept and >infusions are scheduled. Day in and day out we explain, console, think, >brainstorm, research and pray our lives away. It has taken two years for >us >to admit that maybe it's time to apply for disability. 8 months ago the >immuno told us to, but we were in denial. Bills come in and they're >prioritized. Who must get money, who'll wait for money and who do we see >again soon. > >I honestly believe the honeymoon will be over and reality will set in when >Macey's old enough to start asking questions. Until then we'll pray >alittle >more, learn alittle more and love alittle more. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > > > >------------------------------------------------------------------------ >Congratulations to " PAFind, " our latest ONElist of the Week. >http://www.onelist.com >How is ONElist changing YOUR life? Visit our homepage and let us know! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Dear : Thanks for the advice, I will start looking for a new one that will take only insurance. I will also get the paperwork for SSI. My daughter recieves help through state insurance but we must have two pediatricians in order to cover the air force insurance referrals for specialists. I hope getting ssi will not take from the state care. Sincerely, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: honeymoon phase >Date: Mon, 21 Jun 1999 09:30:30 -0700 (PDT) > > > >Annette, > >Just a thought on the family counselor. When my Dh and I were having >problems. Wecouldn't afford to see one. I called around explained the >situation and they waved the fee. They just collected what the ins. >gave them as payment in full. There are counselors out there. But you >will have to explain the situation to them. > >Good luck. I know that SSI is alot of paper work. A friend of mine >has it for 2 f her kids. It really does help. They get something like >$400 a month. One child is autistic and the other has health problems. > >Good luck, Your child needs health care whether or not you can pay up >front or not. Isn't the welfare of the child suppose to come first. I >realize the type of world we live in but come on. Especailly since you >have been paying as you can! > > >=== > and >(neutropenic and immune deficent) >mom to Evan 6, 4 and Abby Rose (almost 2) >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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