Roll call

[Guest guest]

I am here, everyday reading and comparing notes. It is ironic that

articles about fibroids has bee " popping " up. I say that because I

AM ADDING TO THE 'LIST'. Many things are going on in my life right

now and it is getting overwhelming for me. I am in great need of

mental health services , which I olac on taking care of on Monday.

I wlii try to explain as bes I can: Fibroids, yes I have them in my

uterus and have had bad paps for many years but the Drs said it was

a 'class 2 displaysia, nothing to worry about. HA! I went to my new

primary care physian two weeks ago and was extremely pleased with

her. She listened to me, talked to me and ordered what i needed

without a fuss. Then the Phone Call: reminded me of the old times

where the dr comes to the house and phones you etc..... Anyway mty

pap came back 'SEVERLY " bad and she is referring me to an OB-GYN

and/or an Oncoligist....the cancer is back!!!

I have alerady lost my right lung to cancer.. a newborn son to

cancer, and other family members..I know how ugly the disease can

be. Before I get on my 'soapbox' I think I had better end this story

fot now; but before I do let me say that Cancer doesnt hit just a

certian matter of people,,,,it starts with the very young and goes to

the very old. Never think you are safe from cancer.

I thank you for your time to listen, at the moment you are the

only 'friends' I have

Lovingly,

a/k/a BRAT

[Guest guest]

HI ITS COLLEEN IN KANSAS

I have been really busy with my part time job and got really sick with a virus a week ago and missed some work and some weight and got nothing done Hope everyone out there is as good as possible and I am doing pretty well I do read posts when I can and please dont forget Im out here!!!

HUGS Colleen

[Guest guest]

HI EVERYONE,

THOUGHT I WOULD CHECK IN WITH INFO ON MY CONDITIONS TO SEE WHAT CONDITION MY CONDITIONS ARE IN...LOL

AS I TOLD YOU I WAS/AM SCHEDULED FOR A BONE SCAN TO EITHER DIAGNOSE OR RULE OUT WHATEVER THEY R LOOKING FOR, BUT SINCE THE WEATHER IS SO BAD WITH ICE, SNOW AND RAIN (SNAIN) I'M NOT TOO SURE I WILL BE ABLE TO KEEP THE APPOINTMENT.

I WOULD LIKE THE RESULTS OF THE TEST SINCE MY DOCTOR SAID DEPENDING ON THE TEST RESULTS (WHICH I DON'T EVEN KNOW WHAT THEY ARE LOOKING FOR) SHE WILL BE ABLE TO DIAGNOSE ME WITH FIBROMYALGIA.

JUST HAVING A VALIDITY FOR MY PAIN INSTEAD OF BEING TOLD "THERE IS NO REASON TO BE HURTING LIKE YOU SAY U R!!

IF ANYONE HAS INFORMATION ON WHAT THEY MIGHT BE CHECKING FOR WITH A BONE SCAN TO RULE ON A DIAGNOSIS OF FIBRO I WOULD

LIKE TO KNOW.

ALL I CAN SAY IS """I HURT """" WHETHER THERE IS A REASON OR NOT !! ALSO I WOULD LIKE SOME FEEDBACK ON WHAT TYPE OR WHAT DRUGS THEY MAY PERSCRIBE FOR FIBRO, PAIN AND OTHERWISE SYMPTOMS.

ANY FEEDBACK IS VERY MUCH APPRECIATED,

THANKS TO U ALL IN ADVANCE --- THIS GROUP HAS BEEN MORE HELPFUL THAN YOU ALL WILL EVER KNOW............

SINCERELY,

BRAT AKA ONELUNG71756 AND MANY MORE ...LOLsignature__________________________________________________

[Guest guest]

Hi Brat,

I've done that before, it makes me angry with myself... How'd the density tests go??? If ya already told everyone I'll find it here eventually, I have several hundred emails to go through...

Hows the new med working??? Still taking a good turn for you???

Keep in touch...

((( Happy Hugs )))

Helen

HI GROUP!!Hope this letter finds you all as well as can be. Actually I have answered Roll Call the other day, had a looong letter written about what's goin' on, but I hit the wrong button and it never got sent. I lost the whole darn thing!! So here goes a second round.....I will try to condense this, ""kinda like spilled milk, if you're gonna cry over it please condense it!"" LOL A joke to start with since I don't know where to begin.Let's see, I have gone for a bone scan, followed by exrays and now today I go for a bone density since the scan showed VERY thin bones. As for the hystorectomy, I was all physc'ed up for it but when I went for the pre-op he said he wouldn't put me under because of the sounds of my lung be congested so I have had to put that off until (?????) who knows. I went to my PCP on Wed and got the once over, nothing new so to speak. In other words nothing to report on the scan or ex-rays until I get the test done today on density.I did finally see a phsychatrist which I have needed for awhile (I have been under phyc care since 1988) and he looked over my list of meds for depression and anxiety and said I was on the wrong meds for Bi-Polar. So he prescribed LAMICTAL for my Bi-Polar which takes a few weeks to get into my system and be effective BUT, after a few doses I can already feel a difference. If it get's better from here I may be stabalized in mood swings which will make a big difference in how I deal with everything else that I have to deal with, not only in a healthwise perspective but life in general. Before this gets too long I will cut this off now to get ready for the Dr. (test) today. I will try to get another posting out when I get back from the appt. Till then, I will keep all of you in my prayers and thank you all for the help and support this group gives.Forever,BRAT

[Guest guest]

HI Angelbear and All,

I went for the bone density test and it shows osteoporosis in my right hip most of all. So ANOTHER med ( now u guys keep track of these meds I'm gonna open a pharmacy soon)!! I have started on, Actonel, that is taken once a week no eating 1 hr before or after taking and you have to remain standing for 30 minutes after taking it. She also put me on Calcium w/ Vit D.

As far as the Lamictal, it is working great!! even though I haven't gotten to the top dose yet I can tell a difference in my moods and depression. I have taken many drugs for depression, some worked some didn't, but the Lamictal is different it is a 'mood stabilizer' which is really helping with the extreme mood swings due to bi-polar.

BUT, onto another story, I went yesterday for an extensive lung test which I have to take before they will do surgery. I am sooo embarrassed to say this but I couldn't stay awake for the test!!! It wasn't because of meds, as I am sure it appeared to all, because I took only the ones I had to have, no narcotics or anything as such. It was almost like a narcolepsey episode!! I am so embarrassed and I know I put alot of people out by not going through with the test so today I am expecting a phone call from my PCP.

I have never had that happen before even after taking narcotics!! Well I have rambled on enough. Teach you to ask me a simple question (LOL LOL). Just kidding I hope you know. Looking forward to next time, till then, everyone take good care and stay warm.

hugs and kisses.

BRATangelbear1129@... wrote:

Hi Brat,

I've done that before, it makes me angry with myself... How'd the density tests go??? If ya already told everyone I'll find it here eventually, I have several hundred emails to go through...

Hows the new med working??? Still taking a good turn for you???

Keep in touch...

((( Happy Hugs )))

Helen

HI GROUP!!Hope this letter finds you all as well as can be. Actually I have answered Roll Call the other day, had a looong letter written about what's goin' on, but I hit the wrong button and it never got sent. I lost the whole darn thing!! So here goes a second round.....I will try to condense this, ""kinda like spilled milk, if you're gonna cry over it please condense it!"" LOL A joke to start with since I don't know where to begin.Let's see, I have gone for a bone scan, followed by exrays and now today I go for a bone density since the scan showed VERY thin bones. As for the hysterectomy, I was all physc'ed up for it but when I went for the pre-op he said he wouldn't put me under because of the sounds of my lung be congested so I have had to put that off until (?????) who knows. I went to my PCP on

Wed and got the once over, nothing new so to speak. In other words nothing to report on the scan or ex-rays until I get the test done today on density.I did finally see a psychiatrist which I have needed for awhile (I have been under phyc care since 1988) and he looked over my list of meds for depression and anxiety and said I was on the wrong meds for Bi-Polar. So he prescribed LAMICTAL for my Bi-Polar which takes a few weeks to get into my system and be effective BUT, after a few doses I can already feel a difference. If it get's better from here I may be stabilized in mood swings which will make a big difference in how I deal with everything else that I have to deal with, not only in a healthwise perspective but life in general. Before this gets too long I will cut this off now to get ready for the Dr. (test) today. I will try to get another posting out

when I get back from the appt. Till then, I will keep all of you in my prayers and thank you all for the help and support this group gives.Forever,BRAT

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[Guest guest]

Name:

Location: West sackie, New York

Who is the patient: daughter - 10

Diagnosis: from Hypogammaglobulinanemia to Selective IgA def now CVID

How long diagnosed: 9 years

On IVIG? Sub-Q?: IVIG

Dose/Frequency: Gamunex 10 gms every 2 weeks

Ever been to a IDF event? If so which one?: All, 2 Baltimore, 1 North Carolina,

1 Pennsylvania, 1 Florida

Ever been to a Modell Foundation event?: No

Any other info you'd like to add:

[Guest guest]

Name:

Location: Lancaster, Massachusetts

Who is the patient :my daughter Hannah (CVID, JRA)

How long diagnosed:6 years

On IVIG? Sub-Q?: IVIG

Dose/Frequency: 30 gm every two weeks

Ever been to a IDF event? If so which one?: not yet, but plan to

Ever been to a Modell Foundation event?: went to a NEPIN event where the

Modell's were present

My daughters' motto: Carpe Diem - sieze the day, everyday! I asked her if God

could give this cross she bears to someone else, who would she choose? her

response: " I wouldn't give this away to anyone. God knows who can handle this

kinda stuff and nobody can bear this cross like I can. " Puts it all in

perspective.

[Guest guest]

Name: Riley

Location: Lancaster, California

Who is the Patient: Ian, 9 1/2 year old

Diagnosis: CVID; Asthma; Lactose Intolerant, Allergies, Chronic Sinus

Infections

How Long Diagnosed: Almost 1 year now

On IVIG? SubQ: IVIG

Dose/Frequency: Every 3 weeks

Ever been to IDF event? If so, which one? No, would like to attend one.

Ever been to a Modell Foundation event? The UCLA Luau sponsored by

the Modell Foundation a few weeks ago.

[Guest guest]

Location: Washougal, Washington

Patients: Wesley, 11, , 9, , 7, and probably Lucas, 1 all IgA

def. W & S ADHD/Autistic

Mom: Maurita, also Iga def, along with celiac disease.

[Guest guest]

Re: " I am more and more getting over the shock and hurt of family members

who believe a diagnosis of DS means " a problem that needs to be

institutionalized " ......... "

I have to tell you a story. My daughter was considered the sickest baby (at

town Univ Hospital in DC) they'd ever had " who didn't die, " at one

time. So you can just imagine our overwhelming joy at getting the chance to

raise our precious girl, who just happened to have ds, after living through

6 months of not knowing if she'd live due to a horrific cardiac defect.

Well, 9 months after that we were celebrating Father's Day at my parents,

and my mother's older brother was visiting from NM. He was 75 or so at the

time. As I was serving dessert he asked me when I would be sending

away? The question didn't register with me at first and then it dawned on

me what he was really asking. I looked at him (and tried to contain my

rapidly growing heated insides) and said, " Never. " So...he asked again as

if I hadn't heard him correctly. Boy, you could have heard a pin drop at

that table. I know my family was afraid I was going to lunge for him,

especially knowing how much we loved her and how hard we'd fought for her

life. So, I again said, " Never, we're never going to send her away.

Never. " My uncle persevered and tried to explain what he meant and then

asked again. I kid you not. My face was so hot and I was desperately

trying to control my temper and trying to keep in mind the generation he

came from and that he probably never knew anyone with ds, and trying to

maintain respect for my elders as I'd always been taught. Again, there is

100% silence in my parents' house. It's kind of funny when I think back on

how nervous everyone else must have been. Anyway, I looked at him squarely

and I said, " Uncle , is never going to leave us. We will never

send her to live in an institution. We love her; we fought for her life and

she will be staying here forever. (I hadn't begun to think of her as some

day having any independence, you understand) Finally, he seemed to get it

and he began to eat his dessert and I could feel my entire family (20 or so)

breathe a sigh of relief blood hadn't been shed. They knew how fierce my

love for was/is.

And I will say my uncle did not treat her any differently than any other of

his nieces/nephews; he actually was a little brusque sometimes to others,

but never to her. He really developed a deep affection for her.

Eleanor

_____

From: [mailto: ] On Behalf

Of Emileane

Sent: Thursday, November 10, 2005 4:43 AM

Subject: Roll Call

Hi Everyone!

I'm sure not many will remember me b/c I am mostly a lurker however I have

been here a long time. I am , mom to (11) NDA and Meghan (9

DS)..................I find myself laughing at this stage of my girls

growing up b/c I have who's only interest is in calling the Country

radio station to request songs (KMLE for those in Arizona) and then there is

Meghan who is growing in her independence and drives me nuts with her

attendance to " life tasks " ie dumping the recycling, and meeting every

request her sister makes like for a soda or breakfast!!!! Meghan jumps in

to do these things and looks at me as if I am remiss for neglecting her dear

sister......when I am trying to get her dear sister to not be SOOOOOOOOOOO

willing to let all of us wait on her!!!! )))).....

I appreciate the comments on boosting reading and speech.... ..Meghan is

VERY intersted in " getting " reading and she is soooo close however the

" click " hasn't quite happened yet....but then again oftentimes she only

let's us know after the fact!!!

Several years ago Kim (from Mesa) and I organized a picnic for

locals.......there are now two DS family support groups here in the Phx.

area............interesting to me is that I don't really get

involved............what it has to do with is that I see Meghan getting sooo

much attention at school and from me re: her special needs.....and my

11 year old is tempermentally quieter and so sometimes is overlooked by

people, so with my limited free time I tend to attend family activities for

rather than Meghan.............yet again as matures and has

" friends " she is moving into an arena that Meghan is only more seperate from

as she gets older, and in those situations it is she (Meghan) who is

overlooked ie those people who will ask what grade she is in or how

old she is and will not address the same questions/interest to

Meghan..........I'm sure others have the same dilemna...how do you deal with

it????

I am more and more getting over the shock and hurt of family members who

believe a diagnosis of DS means " a problem that needs to be

institutionalized " ......... now I am trying to clear a pathway for MY family

now and in the future! And I so appreciate the words of those of you who

have older children. I have learned so much from you and taken so much

comfort from your stories of ordinary life..struggles and successes!!!

Emileane

[Guest guest]

Hi ,

Kym here We need to get a picnic going again! That was soooooooooooo

much fun and the weather is great now...still in the 80s, but better than

110! Email me and let me know if you are interested. Anyone else from AZ

that would want to come, email me and we can get a little mini suaree going.

I, like , am interested in the non DS sibling solutions...I have to

divide my other time among 4 " typical " kids. It is definitely a carefully

choreographed dance...

Hope to hear from some of you Arizonians regarding getting together,

Kym...mom to 5 including (8ds who just finished his Veteran's day

program at school and did a GREAT job introducing his Grandfather who served

in the Army! I had tears in my eyes)

[Guest guest]

Hi all,

I am Beth(HMS) mom to beth(HMS) 14, Brittany(DS) 13, Willie(ADHD) 11 and

(ND) 2. I am having fun with all my kids' stages of development. I have

to say that I have great respect for my kid's teachers. I gave one a hug today

and went in just to tell her that. They love to hear the good as well as the

bad. She told me how wonderful it was to hear some good news for a change. I

only lurk and ask few questions... hehe.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

Hi ! Nice to see you post and have an update on the girls. I

know exactly what you mean regarding extra attention given to Meghan

and how that could affect Meghan. I avoided support groups for that

reason (plus I find organized groups boring and political) and got most

of my support here. I do have my network of local friends/ fellow

mommy's of PWDS. I also stressed that this is a family list and not

focused on our family member with DS. I've talked about , TJ and

Katey ad naseum, I'm sure! Now that is the only one at home, I

can't get him to run around with me (just like his father!). i do need

to get him involved soon in special olympics or something.

[Guest guest]

Wecome aboard ! I hope that you will have your students utilize this site.

but asyou and I both know nothing takes the place of a classroom with hands on

experience and a teacher to ask questions of. this site is supplemental only.

But I think it could help your students.

Military are the BEST damn trained techs I have ever met!

I have an educators site to if you are interested just email me.

Hoep to hear more from you this year!

Jeanetta

jrnet98 <jrnet98@...> wrote:

Hello All

My Name is , I'm a certified Tech in Ohio

Member of NPTA

Trained in US NAVY and been tech for 22 years

I have worked in Retail, Hospital pharmacy, and am currently with a LTC

company in the evenings that i have been with for 16 years. I am also

an instructor at a technical college in the daytime here in the

Cleveland area.

[Guest guest]

Thank you Lyn

Glad to see you post! I''ve known your addy for a long time.!

So what are you doing career wise?

Jeanetta

Bskcreed@... wrote:

Just getting some back emails read finally - hope I'm not too late for the

roll call. I do want to keep receiving you group via daily digest. Thanks.

> Name Lynn Pawley

> State Indiana

> Pharm Tech Associations that you belong to? Officer? Indiana license

> CPhT? Studying? Registered? CPht

> On the Job Trained? yes

> School Program Educated? no

> Number of years/months you have been a tech or CPhT? 3 1/2 years

> Specialty area: Retail, IV's, Long Term care, Managed Care? Retail for

now

> Hobbies? Gardening, scuba diving

> Etc ? 2 kids, married. 3 dogs, 1 cat.

[Guest guest]

I personally found that sandy's Band CD's were invaluable with dealing

with the normal stresses of life - as well as all the sabotaging HEAD

issues that can wreck out weight loss, and other stuff too. They deal

with all the issues that are important for us to overcome. I sure wish

they had been available when I first started - I would of done much

better much sooner. Lyn

>

> My name is Dianne. I was banded in March 2004 by Dr. Hansen Salt Lake

> City UT.

> I started out at 308# the day of surgery (I know I weighed more but

> lost some before surgery) I am down to 227#. My goal is to get below

> 200#.

> I have found the support groups with my surgeon and web groups have

> helped me when I have strayed from the bandsters rules. So thanks to

> every one that has type their 2 cents worth.

> Dealing with stress (work, ill husband, and famil) without resorting

> to eating for the comfort I re-learn every day. So that is my short

> story..

>

[Guest guest]

-

Great attitude! love what you had to say

wendy

! I am so excited!!! I have been a slow loser and did

> not have any restriction for several months. Now I can really feel

> the band working for me, Being banded is not an easy cure to obesity, but

once you

learn

> to work with the band and stop giving in to all of the junk food

> cravings, you'll see the scale moving again!

[Guest guest]

hi all,

banded 4/03. I have been at goal weight for about 15 years, love my band

emily

338/126

Dr Pohl/Dr

[Guest guest]

ya that should be 1.5 years-LOL

Re: roll call

hi all,

banded 4/03. I have been at goal weight for about 15 years, love my band

emily

338/126

Dr Pohl/Dr

[Guest guest]

,

I am relatively new here. I would love to hear your story. I am always

compelled to talk with people who are banded and reached their goal

weight. Not that I think there is any magic bullet but would you mind

telling us more about you?

Thanks,

[Guest guest]

Lurkers - come out come out where ever you

are!!!

Name: Fritze

General Location/: Woodbury, MN

Pid Pumpkin: Ana Marie

Age: 13 mo

Diagnosis: IgG def, FTT, Dairy Allergy and ???

How long diagnosed: First tested @6 mo, still no definate dianosis

On treatment: Prophylactic antibiotic, possible IVIG within a

couple months

Tell us a little about yourself/your child, or anything!

I would be going insane without this board. After a year of

feeling like I was overreacting, coddling her it is so wonderful to

find out I am just being a mom! My husband is almost done with

school to be a police officer (his 3rd degree!) and I used to do

behavioral therapy with kids with autism. Now I stay home with my

peanut. Ana took her first steps this past weekend (first time in

three months she has been healthy for more than two days...amazing

what she can do!) She loves her two puppies, elmo, baby einstien and

bunny rabbits. Thank you all for the support!

[Guest guest]

Name: cassie redinger

Location: arlington texas

PID Pumpkin: (borderlinish low IgG)

Has had consistently low IgG levels and we have now started infusion

therapy yesterday.

Additional Health Concerns: Asthma, Chronic Sinusitis (as long as he

stays on Biaxin), history of ear infections with 3rd set of tubes.

Have an older children, Jesika (who is 16 and a Sophmore in high

school), /Jana who are 14 and freshmen in high school.

Cassie

[Guest guest]

, here for roll call. = )

Los Angeles, CA

Our little princess is 4 years old.

CVID

Hypogam/T-cell dysfunction for 2 years. Post life threatening bout of GI

infection.

IgG therapy is working!

Welcome all new parents. It does get better!

[Guest guest]

Hello Dawn Souza, 35 diagnosed 3 months

North Kingstown, RI

cvid

Souza, 4-hypogammaglobulinemia

diagnosed 2 yrs. on ivig 10 grams x three weeks

DAN ZANG <zanggang@...> wrote:

Subject: Re: Another roll call - Lurkers - come out come out where ever you

a...

Name Janet

General Location/state/city: Boise, Idaho

Pid Pumpkin:

Age: 8 (almost 9)

Diagnosis: XLA

How long diagnosed: diagnosed at almost 6 years old

On treatment: IVIG - 28 days - home healthcare

Family Info- is the youngest of 6 (last 3 adopted through foster care

so no other PID issues to deal with here.) We have one son whose already

graduated from college, 2 sons currently in college and 2 teenage daughters that

are testing us beyond belief. We think (even with his medical issues)

was God's gift to us for putting up with his sisters.

[Guest guest]

Lurkers - come out come out where ever you

are!!!

Name: Lloyd

General Location/: Asheville, NC

Pid Pumpkin: Ashton

Age: 12

Diagnosis: CVID, Asthma, Dyslexia, Anxiety

Ashton has had her port for 1 1/2 yr. No problems with the port. She was a

horrible stick. She receives IVIG every 2 weeks. She just got over an

illness with one run of Omnicef and an increase in her pulm. meds. She is back

to

her normal doses now.

Thank God they finally found out what was wrong with her. She was always

sick as a little one. Now she is growing, gaining weight, can play competitive

soccer, etc..

IVIG has been a blessing. She is writing a term paper on CVID right now.

The more she learns, the more it helps her anxiety. As the parent, I get

depressed when she gets sick. I don't live with the diagnosis every day. When

she

was first diagnosed, I couldn't stop thinking about it. I was worried sick,

literally. Now, it is not the first thing I think of upon waking. It took a

long time to get to this point. Don't give up!

L

Mom to Ashton 12 CVID, Asthma, Dyslexia & Marina 9 Asthma