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Hey Richard,
I remember you from a few weeks ago, I think. Wow!! I knew it was
different for a man with S.S., but I had NO idea how difficult. I
started thinking about what you said. Because of our disease, most
of us are small, and underdeveloped. Now, for a woman it's hard,
most of us don't have the curves we want. But for a man, I suppose
it's even more difficult because of your small build. Most women
want a big hunky man, just like a man wants a woman with some "meat
on her bones'. But, women can get away with it more than a man.
Something I never stopped to think about.
You are right about trying to find someone of the opposite sex, and
how hard it is. I've done the same thing. You really get to see
another side of the person when you get sick, especially when they
have to go with you to the hospital! Some stayed, most left, and
couldn't handle it. Fortunately, I found my husband who is a gem.
He is a Christian God fearing man, and I think that has alot to do
with it. Their priorities are different. I have a child now, (I'm
37). I had him when I was 33, and I recommend that to anyone who has
S.S. to wait if they can till they are older. My body wasn't ready
to have a baby when I was in my twenties. And still, I won't be
having any more. I was told that for someone with S.S., the second
child does them in. Many times, it doesn't turn out too well the
second time.
I'm glad you were able to tell your side of the story. I've never
know a male with S.S., and it is good to see the many sides of this
disease. I'm also glad you were able to make peace with your
Father. I've had a similar situation with my Father, and he died
before I was able to make peace, so be glad.
Please feel free to tell us your experiences anytime. I'm sure we
all enjoy reading them, and can relate also.
Celina

In a message dated 4/9/2007 12:41:37 AM Eastern Daylight Time, ultramagnimus@... writes:

Thanks Juanita for the card.
Can you all believe the weather? I looked at a map of the united
states just now. Most of the country is below 50 degrees. It's in
the Thirties in New England still. I've been feeling so bad. I was
looking forward to the warm weather because my room is a freezer at
night and chilly in the day. It's soo not fair. :^ (
Jonathan.

Hi Jonathan the weather is off the charts everywhere it seems Global warming! Smile!

In a message dated 4/10/2007 5:48:18 AM Eastern Daylight Time, mcmonkam@... writes:

Hello Juanita,

Thanks for your Easter greetings and love. It was wonderful. Out here in Cameroon, it was nice amongst the christian community as early in the sunday morning church services had started in glorifying the Christ's resurrection.

regards,
monkam

HI Monkam that sounds like a beautiful service a good friend of mine went to Easter service on the beach (she lives in Florida) its a very early morning service before 9 am what a peaceful time to attend a service. Love Juanita

. ,_._,___

Dear Lillian,

My name is Richard Thompson and I have SS sickle cell. I can talk to you if you want to call me at 502-418-1270 or email me a jcricardo14@... I am married but it took God to find a woman who is willing enough to deal with my illness. My wife is deaf and most people with disabilities can understand each other. I have friends/some family members now who have gotten some sickness/illness now apologizing to me for their rude comments. I try not to too much burden my wife with my illness unless it is an emergency.

Sometimes some handicapped people can used loved-one as personal slaves. So I try not to do that to my wife and she realized that she can not use her deafness to get away with some things. Whenever I dated a woman, I would ask God to make me sick. I wanted to see her reactions during my illness. If it was too much for her, then she couldn't handle it. Or if she did handle it then that gave me some sign that she can deal with it.

I have found out that it is ok for a woman to be weak with an illness but not a man. It is very hard for a man because other men view sickness as a weakness. I explained to my Aunt a few years ago that is was hard to meet women because of my illness. If you can not play sports and defend yourself in fights, then you are considered a weak man. Most women want a man who is independent (works), and strong physically.

If I had a daughter, I would want her to date and marry a man who worked and stand on his feet spiritual, physical and financially. I am not saying date any guy who doesnt want to try to work or be independant.

Many times family says that I try. Most people would love to have an illness and be on SSI for their entire life. I am on SSI because it is a necessity. I also have a part time job tutoring kids with math and reading problems.

I have a friend named Lisa who is like a sister to me. We have been friends since 1990. She at one time told me that what African American woman who would want a man to have an illness and be weak. Many of my family members would say that I am lazy because I was working as a customer service rep for an insurance company.

I am not really working a hard job and I still live at home with my parents. I try and try to explain but no one would understand.

Now in a nutshell they do understand. My Aunt who thought I was weak and lazy. My parents went out of town on vacation. I got sick and called her to take me to the hospital. My leg was hurting so bad that I had to use crutches. She never saw me sick before. When she picked me up and dropped me off at the hospital, she was neverous and was in shock. After that event, she had more respect for me.

My friend Lisa now has congenital heart failure and now regrets and apologies for her statements. Her ex-husband thinks she is weak because of her illness.

My father and I didnt really get along until I got marred at 37. Growing up he always view me as weak and just using this illness as a crutch. He would prefer my brother over me. One time a friend came over and visit and I introduced my father to my friend Lisa. He just shook his head and didnt say anything. Five minutes later, my brother came in the house and he said How is my son doing? This is the type of environment that I had to grow up. When I got sick at 24 and my mother insisted we go to Nashville Tennessee to a sickle Cell Clinic, my father had seen all my mannerism and it opened my eyes that I do have a true illness. My parents and I live together in one house. He saw my good and bad side of me. Yet, it took that trip to open his eyes. From my past experience with male friendships, sickness and other things like that are view as weak. Anything that you can not comprehend, it is better to avoid and not focus on it.

Yet, I also have to forgive him. Things are better after I got married. On Christmas day 2004, my wife and I went over to my parents house to exchange presents. My father made a comment that he thought that I would come over and visit every Sunday like most children do. I asked him why he expected that from me. He stated that most children come and visited their parents. I explained that when I was growing up that he made life hard for me. He never wanted me to attend any family vacations; I lived with my parents until I was 37. I explained that he made life hard for me. He didnt accept me as man. He would put me down and he didnt want to associate with me. He treated my brother better then me.

Yet, I am a Christian man who interprets for the deaf, I have a college degree and I try to work a job and yet, I am not a (MAN) because I am living at home. I explained to him over and over again that I do not have the extra money to move out. I have showed him my budget and after I paid off my bills, I have $400 to live on. At that point of my life, I was working at a full time. I am now on disability.

All of that meant nothing to him because I was living at home. I asked him Why in the world? Would I want to come and visit him after this type of treatment?"

He apologized for making life hard for me. In reality, that was the best Christmas gift present I have ever received. He thought by doing those things would encouragement me to be more independent. In other words, he wanted to encourage me to be independent. He didnt realize his actions caused more harm then good. Now he tries to help me more. Which is good, but I still have hard feeling about this. Anyone with a handicapped child should try to help and encourage them and not avoiding them. I have given this hatred and anger to God. It will take time, but things are much better between us. I told him and some retired men who want to reconnect with their sons that it will take time.

Sorry my letters are long, but you wanted a male point of view of SCA. I tell anyone this. If I didnt have God in my life and my mothers love and acceptance. God is always first. I would have committed suicide by now, However, I waited on God and he has given me family and love. I didnt get married until I was 37, but it was worth it because my wife understand me at times more then I understand myself. I also have to wait on her to be the wife I want, but I am also working on being the husband God wants me to be.

http://clinicaltrials.gov/ct/gui/action/FindCondition?
ui=D000755&recruiting=true
The part of the link starting with UI is not clickable for some
reason. Copy and paste the entire thing into your search engine.

Hi all,
I've been brainstorming this foundation idea. I happen to run by some
television documentaries that reminded me that minority illnesses get
overlooked because the pharmasutical companies don't want to invest in
them. Not enough sick people to make a profit. It's not that it's
not a well known illness. I suppose that's a battle to fight another
time.
I was wondering if the Elders in this group could give me some ideas
of where I needed to go within my local towns and in my Capitol to get
started and what kind of questions to ask my doctors office as far as
getting information about community services and health care reform.
Thanks,
Jonathan.

Bootoosmom,
Here's that link again for the clinical trials. Sorry. However, I
did include the page where I found everything at the bottom of the
other post but here's the trials link again.
complete.
http://clinicaltrials.gov/ct/gui/action/FindCondition?
ui=D000755&recruiting=true
Lilian,
It is to be expected that people will be First of all, fearful of what
they don't know, two, worried about getting involved with someone who
is sick. Probably for a lot of different reasons. If they really
care about you, they will stay by your side. When you chose to reveal
your health issues is your business but if the person really cares
about you, you will know right then and there. From experience, some
stick around for a little and then leave. Others worry a lot at
first, about you and about themselves (what am I getting into?) but
then accept all of you and go on with their life with you. But
everyone handles it differently.
As for a man's sickle cell symptoms....Everyone is different. Some
symptoms are the same and some aren't. I have some issues that seem
very abnormal to be considered symptoms of sickle cell, which occure,
occationally, when I lay down to sleep (flat). I was interviewed last
year for one of them because doctors are still trying to find out why
they continue past childhood and affect adults.
Jonathan

Johnathan, you crack me up!! No, you really do make me laugh! Anyway,
I'll check out those sites. I tried one of them, the one for the
clinical trials, and it kept giving me a message like "your request was
missing the'ui' parameter." Could you check it out for me, please?
Thanks for the plethera of info. As I'm sure we ALL need to continue
to educate ourselves, on a ongoing basis. My Mother taught me this.
As soon as she found out that I had S.S. she started her research. She
had never heard of it. So, because we always kept up on our research,
sometimes we knew MORE than the doctors! (I know, that's not saying
alot!) Anyway, I'll let you all know how the Nitric Oxide goes.
Celina

That's why our main goal should be focused on spreading awareness
throughout the country.
That was very disturbing to read about how so many people who have the
trait don't know the facts. As far as the white community is
concerned, they make up a biger population who does not have it but I
bet the odds that they know of at least one person who does have it or
has heard of it.
That's why I was talking about supporting Genetic Research (to boost
awareness regardless if it affects their lives or not) and not just
focusing on Sickle Cell Disease within the media.
Jonathan.

Thanks Juanita and Betty.
I read the article concerning The Tate Bros. Foundation (Copied and
pasted that name into my search engine) They are having an event in
Illinois with a lot of stars. Black tie affairs to raise money and
so forth. They are big stars and their foundation is very well
known.
I did a little research and found all kinds of things just from that
one link.
Read each of these then check out their pages. There's endless,
question specific, information on every one of these sites.
http://www.scinfo.org/painmgpt.htm
This is a page on the Primary Sickle Cell web site.
It is general information but if you take Over The Counter drugs you
will want to see the Miligram Table that is about half way down the
page.
It worried me a little. Time to find a new way to manage my pain!
http://www.leukemia-lymphoma.org/all_page?item_id=5965
This is not for Sickle Cell but Stem Cell Transplants are the
treatment that is most used to cure people of the disease. At the
moment it has a Critically high mortallity rate. I've checked all
the options. It is reserved for childrent and people who have near
fatal sysmtoms from Sickle Cell. But it is very eplanitory. You
will have a better understanding of how the treament works.
http://clinicaltrials.gov/ct/gui/action/FindCondition?
ui=D000755&recruiting=true
Answer Central.
There are numerous medications on the link descriptions within this
page. One most recently asked question was about Nitric Oxide. So
here you go Bootoosmom! They are still in clinical trials and
looking for people I would imagine.
I'M SICK OF THE GUINI PIG GAME though.
Clinical trials do need people to help weed out the "Bugs", so to
speak. But, with every medication that hasn't been out for five to
ten years comes the remaining number of years of dealing with the
complications it comes with. Also, their unknown long term affects
on your health, organs, and life......maybe even children born
during the testing years.
http://www.nlm.nih.gov/medlineplus/sicklecellanemia.html
All of the information above was taken from this page which has a
plethera of information for you to keep exploring. All the links
are at the bottom. Don't explore the tabs at the top till you've
read the entire page. You might miss something. They talk about
Teenagers, Death, Effects of Hydroxyurea in people who have the
worst cases, and much more.......
Those guys, The Tate Bros., are inspiration to me. I'm trying to be
starting something similar here in MASS. I'm going to focus hard on
the media with my campaign. Sickle Cell does not get the exposure
it deserves.
Best Regards,
Jonathan
Strong Are The Ties That Bind us,
NOTHING'S GONNA STAND IN OUR WAY!

To those of us who have worked so hard to bring attention to SCD by asking Oprah to do a show I just had to write this post. I turned her show on just now and she said she has received thousands of emails (thousands really )? About doing a show on Autism. I think this is something that also should be discussed but I am sorry I immediately thought of how hard we have tried over the years to get her to do a show or even a segment on SCD. Unbelievable! Love Juanita

Hey all,
Have you been watching the news? NPR is good
We have some states taking the Stem Cell Research projects as their
own responsibility. It's good to see that we are still the "United
States" of America and not just America and the Bush
Administration.
I'm going to see what I can find out about projects in different
states. This might be the starting point I've been looking for. I
don't think my state has this program running yet. New York and
California are the biggest contenders so far. But we have a
Democratic Government now so it shouldn't be long before this thing
blows up BIG, and this Science produces major break throughs within
the next five to ten years.
Our members have all said it at least once about how nice it is to
talk to people who understand what they are going through. To be
able to speak to someone and not be looked at like all you talk
about is being sick. WE ARE SICK. This is our life and we are
looking for help when we talk about it! Why should that be looked
down on? Like when you ask you loved one "How was your day?" with
an eager to know ear and they tell you about all the crap they went
through. Most people try to help them feel better about tomorrow,
right? Of course they do!
I'm at the beginning of starting an organization that will teach
people to understand the difference between someone who says they
don't feel well a lot and a sick person, struggling with thier
health and talks about it every day. The sympathetic ear will turn
into and understanding and concerned ear. These are the type of
people who fight to change laws and push the goverment to take
action where they have been ignorant. They also help you to be
happy when you are not.
Everyone in here should be looking at what I am saying and doing as
a commuinity service...People helping people for free. I may need
your advice and assistance from time to time but please remember
that it is for "our future", where we do not have issues with
socializing about our pains and where we are all pain free.
Best Regards,
Jonathan.

In a message dated 3/9/2007 5:36:24 PM Eastern Daylight Time, Betty55111@... writes:

Click here: Black Doctor :: Content - Celebrities and Sickle Cell

This article is from Black Doctor Web site. I thought I would share it with everyone.
Betty

Betty I have just had a chance to look through this very interesting thanks for sending it through Love Juanita

Hey Boot's Man's Mom. Kidding ;^)
I beleive it's spelled Loparomide. Sorry.
I've only been on XJADE for a year or so. I have not been taking it
every day. Because of it's powerful laxative affects and the fact
that you can't take it with food (30 before meals) I had not been
taking it every day.
I drank XJADE with Power Aide at first.
(Little side story for everyone)
I switched from Gatorade to Power Aide because Gatorade was too
viscous (syrupy) for just every day use. I was not getting the full
hydration benfits. Poweraide is absorbed better in a slow moving
system. Gatorade is better if your heart is going someplace.
(FYI. your body absorbes fluid better when it is cold! But stay away
from frequently drinking cold fluids. lol. Does that make sence?
Damned double edged swards.)
Anyway.
You can take XJADE with any juice or water. No Soda's or heavy
meals and try to stay away from Apples and Oranges including juices.
The citric acids cause somace issues and you will defeat the purpose
because it will just take out what is in your food instead of what
is trapped in your organs.
At the moment, with the Loparomide, I have learned how to make it
work with well with Power Aide and water. I always drank it with
Juices because of the flavoring but, that gets expensive. Put some
surgar in water instead.
Note(Save your 20fl oz wide mouth bottle, add three Xjade and three
sugars and water and you will have a milky looking very light sweet
drink. It's pretty good.)
It says "Take with water and drink all at once."
DO NOT EVER....."EVER" DRINK IT IN LESS THAN HALF AN HOUR. You have
the whole day to take this stuff. Who cares if your doctor thinks
it is the best way for it to work!!!! It will not stop how it works
and believe me,
You will REGRET IT!!
IT'S A VERY SLOPY STORY AND I DON'T WANT TO TELL IT.
You won't get hurt or anything. It's just very very unpleasant and
doesn't stop for a few days. It causes dehydration, and when your
Water Table is messed up you don't feel good in general. Loparomide
(Imodium otc) counteracts that nasty experience!
PRAIS THE LORD and pass the Loparomide!!
Drink your XJade mix over a few hours instead. (keep shaking the
bottle because it settles at the bottom)
I was saying to get the perscription for Loparomide because one pack
of Imodium goes in less than two weeks and doesn't work very well,
and GETS VERY EXPENSIVE.
Note to all.
If you are having issues with the Messy story while withdrawing from
pain meds, hold off from the XJade. Fix yourself before you try to
fix your internals!
That is all,
Report to your stations and prepare for your missions.
Jonathan

You're asking a good one when asking about replies. I usualy just
reply or start a new post. Maybe someone else can help you out on that

--- Hey Johnathan, Can you give me more info on this XJade stuff? I've
never heard of it, and it sounds interesting. Also, has anyone heard
of "Hemoxide"? It is supposed to be a form of Nitric Oxide. I've done
some research and it seems that it helps eleminate sickling before it
gets to be a crisis. What I've found, it seems to make alot of sense.
Go to "health-reports.com/sicklecell.html", and PLEASE tell me what you
think. Again, it really makes alot of sense. Talk to ya soon. Celina

-Hi Sheila. First, could you do me a favor and tell me all about the
group replies. I'm still trying to figure out the difference
between, "Reply", "Reply to Group", and Web reply".
Thank you, I know it's a stupid question, but I just can't get it.
Secondly, It's just really nice to know that I can talk to someone
about my illness, and they can really understand! Sometimes when you
talk to other people, they start to think that all I can talk about is
being sick. It's very difficult, as I'm sure you know. How is your
support group, or should I say your support system? Celina
--

If anyone is taking Exjade would they please post how it is working for them? I have a dear friend in England with SCD. She is waiting for funding so she can get her prescription for it. Its so difficult in other countries So if anyone has any experience with it good or bad please post them. Thanks so much Juanita

Hey Everyone,
I've been back for some time. I tried to email a thank you from

Hi everyone. I'm one of the new ones to the group. I was the one with
the question about the ulcers. I wanted to join the chat, but I was

Hi Everyone, I will have to say that Betty has been very dilegent in
trying to get a few people together for a chat. I was on with her a
little bit yesterday and it was nice. It's good to be able to talk to
someone who knows where you are coming from. Although I couldn't chat
long, it was reasuring. I think a few people said they were interested
so I think Betty said she is going to try to get online at the same
time every night. Just wanted to let you all know. Take care, Sheila

Lele Happy Birthday! How cool that you and Mwenda have your birthdays so close together. Have a wonderful day and when you stop celebrating drop us a line and let us know how you are and what a wonderful day you had! Love Juanita

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Hi Betty, I will try to get on around 10pm est.

Here's a little song I wrote
You might want to sing it note for note
Don't worry.........Beeeeeeeee Happy!
Because, when you worry your face will frown,
And that will bring everybody down
Dont worry.
Be happy.
Don't worry, Be hppy now!

Sorry to hear you are in the hospital. I hope and pray you get the
treatment you need and deserve. You'll be feeling better soon. Here is
a little poem for you....
Think Good Thoughts
Being sick has a mental part,
So use your head to cure you.
Thinking good thoughts is the way to start,
And smiling works, I assure you.
Keep up your spirits to cheer yourself;
Don't let the gloomies win.
A happy soul will get well fast,
And right now is the time to begin.

In a message dated 3/23/2007 2:58:40 AM Eastern Daylight Time, ultramagnimus@... writes:

Hey all. I wanted to say welcome to our new people.
I'm back from the hospital. Four hours in a bed being ignored when
I am yelling from the pain. It's like pulling teeth...talking to
those doctors. They would not transfuse me even though my numbers
said I needed to be. The doctor said there was no grounds for it.
This is rediculas. I will see my doctor at 1 pm today and get some
amendments placed in my file about taking action and so forth. I
hope he listens and transfuses me. Anyone have any ideas about what
to say to these knuckle heads to get them to stop play'n around with
me like I don't matter?

HI Jonathan sorry you are having so much trouble. Why not get your Primary DR to put some sort of protocol in your file. I shared one with my other SC group it was sent to us by, Chelley who used it for her husband and it has worked well. This way they have in your file what Meds you take, what your labs look like all of the good stuff! Smile! Also it would be a big help to you if you were able to take someone with you into the ER it really does make a difference when you have someone who will advocate for you. Here it is.This is just a guideline you can make whatever changes you see fit to make :

THis

Dear Dr. (DR's name),

We are writing this letter to let you know that we have spoken to the nursing administration at UCH- Fletcher campus about the effectiveness of an ER protocol for a patient with a chronic disease like sickle cell. She seems to agree that this might be effective for expedited service when XXX is in excruciating pain, having one in his permanent hospital chart and also with his person to be shown upon arrival to the ER. Due to a lot of mishaps and wrong treatment protocols in the emergency department the sickle cell association has come up with a protocol that would be useful for those living with the disease. We believe that this would help XXX personally be able to be assessed quickly and accurately when in a crisis.

At this time we would like to request that you review the attached protocol and complete it with your own treatment protocol for XXX and send it to us and the medical records department at UCH-Fletcher (or you could send us both copies and we will assure that it gets in to his chart at the hospital). It has been filled in with an example of the information that may be needed for this to be beneficial. Please feel free to adjust the information provided to be most effective. We really would like to give this option a chance as our recent experiences to the emergency room have been a nightmare and left XXX in great pain and very helpless. The ER doctors often use medication that they feel is appropriate but has no effect on XXX particular pain and then he has to wait the time length they feel appropriate before changing it to something that would work. This causes unnecessary pain and delay of proper treatment. It shouldnât take to much time and it will really be appreciated.
We have heard that this type of advance preparation has really cut down on mistakes and undue suffering.

Your time and effort is greatly appreciated. We are so happy that God has placed you in our path as XXX hemo doctor. If you can not or donât feel that you do not want to do this please let us know either way. God Bless you and your staff!

Sincerely,

Your name

Contact number-

Fax number-

Home number-

Doctorâs letterhead (SAMPLE)

Hey Jonathan, Sorry to hear about your ordeal at the hospital. Is this
an actual hematologist telling you that you don't need a transfusion?
If not, you have the right to requset a hematoologist, or get your
regular hematologist to write the order for the hospital. I think it
is rediculous that they are putting you through this. When I feel like
my count is low, I call my hematologist, he writes for bloodwork, plus
a type and cross (just in case) then within an hour he calls me back
and lets me know if I need blood. Then they set me up in the
outpatient department usually the next day for blood and pain meds. If
I don't need blood, then they give me fluids and pain meds. Then about
5 hrs later, I go home. It usually helps. Is that a possibility for
your docs to do that? Just so you can avoid the ER. I hate the ER.
Just a suggestion. I hope you get this before your appt. then you can
ask your dr. Hope this helps. Take care of yourself. Sheila

I don't think I will be there tonight. I may be having a crisis.

Hi Betty, Jonathan and everyone, I will try to make the chat tonight.
That is when I am usually getting the boys down to sleep. I will try
to get them down a little earlier tonight. I may be a little late
otherwise. It will be nice to talk to everyone. Later, Sheila

I believe I missed a 1 in Betty's IM name.
Betty551111

Hi Everyone.
Jonathan here.
Betty and I had a conferrence a little while ago and we are going to
start our regular chat sessions on Tuesdays and Thursdays at 8:30pm
Central Time. Betty's time.
9:30EST
7:30MST
6:30PST
These initial times are subject to change depending on group members
average availabilities. We will let you know.

Enter your vote today! A new poll has been created for the
sicklecell group:
What do you think you or a loved one struggles with the most?
o Sickle Crisis
o Unrelenting Pain and or Fatigue
o Vison problems
o Leg Sores
o All of the above
To vote, please visit the following web page:

I agree that it is better to talk to the group about certain things
than it is to talk to a friend or even your partner. Some things just
can't be understood or sometimes they are looked at with annoyance of
hearing repetition or with the eyes of sorrow and pitty. There are
certain people who are not like that but we have years of friendship
between us. Not to say that everyone is that way.
This is the first group of people I've spoken to about anything deeply
troubling and have been recieved with complete understanding and
unconditional caring. As much as I don't think I need that much help
dealing with my situation, I see the value of speaking to others about
reoccuring things and not feeling concerned that they will not want to
hear it or feel sorry for me. :^) Not to mention wondering if I will
be a burdon on anyone because they realy cannot do anything for me. I
never liked to tell anyone what was going on because I didn't want
people to worry needlessly or because of me when it's the same thing
over and over again.
Jonathan.

I saw your request also Betty. It looked like you requested to be in
my list but my computer is acting wierd. I accepted.
I had also been thinking that it would help to create a Frequently
Asked Questions folder where we could put the most popular answers to
these "Please help me now" questions we are getting. A Polls
questionair on certain issues would help to give an unbias answer to
these questions and newcomers can brows the folders to find what they
are looking for.
I don't mean to step on anyones toes in here. I'm just trying to
become more organized and involved in helping people. I hope I didn't
make you stircrazy with the chat thing Betty.
Jonathan.

Hi everyone,
I'm going to focus on the Leg Sore issue first.
My uncle had that problem. My father told me stories about it.
From what I understood the most (which is also something that is
likely to be a cause based on the nature of our illness) The sores
that appear on legs and feet, where circulation is the poorest, are
caused by the breaking down of the blood vessels and arteries
themselves. So, it's like when you get a bruise under your skin and
you turn blue from the blood filling into the damaged area. This is
a natural occurance caused by sickling, as scary as that is to think
about. This is why I asked Jay about his girlfriends blood platelet
levels when he asked the tatoo question. "Will she bleed a lot?"
We are at risk for stroke because of this weakening of blood
vessels, not to mention the clotting that can burst them too (I
should have mentioned that earlier).
So, to add, the same food and activities that cause blood vessels to
burst and cause stroke are the same things to avoid for your leg
ulscers to go away.
The leg wrap is something I've heard a lot about. I'm not sure what
is in it. I have not done my extensive research yet...getting
started though. But, I would say avoid salt and over strenuous
activity as always. Water, although increases blood volume, will
not build a strong cardio vascular system by iself. Only foods that
promote blood flow and healthy bones will rebuild damaged blood
vessels. I don't know about any specific medications to take that
will do this. I'm not sold on the Hydroxy Urea regiment either.
FYI TO MAKE A POINT. At night, I suffer from great pain. My
circulation drops so much lying flat that I feel intense pain while
I am asleep and I remember every second of it.
Our legs NEED to be elevated at night on a regular basis, I am
realizing now. No questions asked. Just do it.
Whenever I am in the hospital beds, CRAFT MATICS, I have the most
glorious sleeps and wake up refreshed and ready to tackle the day.
So we should all try to elevate our upper body too. I like to sleep
on my stomac a lot so I have a problem there. I'm a wrestless
sleeper. :^(
Also, a good habbit to create is to soak our legs in warm to hot
water (preferably in a bath or jet tub of some kind). Do it yourself
Leg therapy. You can add a massage to that as well if you can.
My uncle had serious problems with leg ulscers. I do not like the
idea of falling victim to anything and not having prepared for it.
I've never had this particular issue happen. I'm glad this topic
came up. I feel for those of you who are experiencing this now.
Jonathan.

Thanks everyone for your advice. I'm going to try the Unna boot and
tell you how it goes.
Celna

Click here: Lab Tests Online: Welcome!

http://www.labtestsonline.org/

The website was shared in one of my other SC groups it is excellent and I wanted to pass it on to you! Love Juanita

Hi my name is Richard and I am from Louisville, Ky. Dose anyone knows
of a good work at home business or job. I need extra money for my
family and I feel that one day my health will worsen or become weaker.
I need something to fall back on. I have disability but that is not
enough to support a family. My wife and I would like to have a baby.
Maybe it is a male testistrone thing, but I want to support/provide for
my family. I am in a catch 22. I want to provide and yet my body fights
against me. If you have any suggestions, please email directly at
(jcricardo14@...)
Thanks

My daughter went to her DR again today for her leg ulcers he gave her more antibiotics. He also some sort of compress for her leg. I cannot understand the prescription so I dont know what it is until she gets it filled. He told her he was going to do some research on leg ulcers in Sickle Cell Patients. He also told her to email him any information that she finds on the Internet. These DR here are not exposed to this disease and hardly know a thing about it.

Betty

Sheila you will not find the room unless I am in it.

I dont know why. I am sure that can be changed.I will be in the room from 8-9 central and 10-11 tonight

Betty

Thanks to everyone for the information about bedwetting. They were all very good suggestions.

God Bless,

Johnita
Someone was asking about Bedwetting and SCD here is some info. I am sorry I don't recall who it was that asked, I do know someone did respond with some good suggestions.

Bedwetting
Question: Is bedwetting common in sickle cell patients
Answer: Yes, bed-wetting can be related to sickle cell disease. The kidney is damaged by sickling from early in childhood, and cannot hold onto fluids normally. The kidney produces urine through the night, more than for a normal child, and the urinary bladder fills up during the night. Then the child has to urinate, either waking up to go to the bathroom or urinates while still asleep. Medications that help other children with bed-wetting usually do not help those with sickle cell disease. Usually, the solution is
to persuade the child and train the child to wake up during the night (reward system, calendar of "dry nights," having the child wash the sheets, setting alarm clocks, using alarm devices that awaken the child when the underwear is a little wet, having nightlights between the bedroom & the bathroom). Cutting back on drinking fluids for a couple hours before bedtime and going to the bathroom before going to sleep are also helpful.

I did try again to find the room, and was unsuccessful. I don't know
why? You are giving it a lot of effort thank you for that. Johnathan

Leg Ulcers

Leg ulcers are seen in 10 to 15% of older children and adults with sickle cell anemia. They may start as a simple insect bite or cut that will not heal. They are likely caused by poor circulation to the skin.

Treatment includes saline wet-to-dry dressings, Unna boots ,and special wound dressings. Leg elevation and use of elastic stockings are very important to speed healing.

Sickle cell ulcers usually begin as small, elevated, crusting sores on the lower third of the leg, over the medial or lateral malleolus of the ankle. Occasionally, ulcers are seen over the tibia or the dorsum of the foot. They can be single or multiple. Some heal rapidly, others persist for years, and others heal only to recur in the area of scarred tissue. In the early phase, the neighboring skin appears to be healthy, but as the ulcer persists, the surrounding skin shows hyperpigmentation with loss of subcutaneous fat(under the skin ) and hair follicles. These ulcers can be very painful and often are accompanied by reactive cellulitis and regional (inguinal) adenitis.
A general physical examination should search
for other causes of leg ulcers such as varicose veins, diabetes mellitus, and collagen vascular disease. Before therapy, a radiograph of the leg is performed to rule out osteomyelitis,(infectious inflammatory disease of bone) which is rare, even though periosteal (situated around the bone , connective tissue that closely invest all bones) thickening is common.
Ankle ulcers are painful, and the patient should be given moderately potent analgesics such as oxycodone. Bed rest and elevation of the leg to reduce edema are useful, though not always practical. Wet-to-dry dressings, even if applied only 2 or 3 times a day, can provide gentle debridement (contaminated tissue ); cooperation of patients increases when they are permitted to dampen the dressing slightly before removal, since it is a painful process. Oral zinc sulfate (200 mg3 times a day) probably does no harm if it does not cause nausea, and may be worth using. After pain and swelling have subsided, the use of Unna boots can be helpful. Patients can be taught to change the dressing themselves, and must be instructed to remove it promptly if swelling recurs. Patients need to know before a boot is first applied that a shoe may no longer fit when the boot is in place, and a loose sneaker or sandal may fit more easily.
If there is much exudate,( exuded matter , that has oozed or spread out in a directions) the boot may need
to be changed 2 or 3 times a week; as ulcers improve, weekly changes are sufficient

Someone was asking about Bedwetting and SCD here is some info. I am sorry I don't recall who it was that asked, I do know someone did respond with some good suggestions.

Bedwetting

Question: Is bedwetting common in sickle cell patients

Answer: Yes, bed-wetting can be related to sickle cell disease. The kidney is damaged by sickling from early in childhood, and cannot hold onto fluids normally. The kidney produces urine through the night, more than for a normal child, and the urinary bladder fills up during the night. Then the child has to urinate, either waking up to go to the bathroom or urinates while still asleep. Medications that help other children with bed-wetting usually do not help those with sickle cell disease. Usually, the solution is
to persuade the child and train the child to wake up during the night (reward system, calendar of "dry nights," having the child wash the sheets, setting alarm clocks, using alarm devices that awaken the child when the underwear is a little wet, having nightlights between the bedroom & the bathroom). Cutting back on drinking fluids for a couple hours before bedtime and going to the bathroom before going to sleep are also helpful.

In a message dated 3/16/2007 12:38:01 AM Eastern Daylight Time, lewisfamily03@... writes:

just started
suffering from leg ulcers, and I wanted to know if anyone has any
advice for this. I have gone to the Wound Care Centers, but I feel
it's a waste of time because they do what I can do at home. Their
supplies are just better! I suffered from one on my foot last year,
(my very first), and had a bad time with it, and alot of pain. Now,
I have one on my ankle, (same leg), and I don't want to go through
the same thing again! Please tell me of your experiences, so I won't

Hi Celina welcome to the group the info Anndis gave you about the Unna Boot is good . I use to have a lot of info about Leg Ulcers and SCD but when my PC crashed last summer I lost a lot of my info and I have just been too lazy to type it up all over again ! LOL! We use to have some members who did suffer with Leg Ulcers and maybe they will join in and help you out in the meantime I will send you what I have. Take care Juanita

In a message dated 3/16/2007 12:57:36 AM Eastern Daylight Time, dis_is_still_hott@... writes:

HEY CELINA WELCOME TO TE GROUP, I'M ANNDIS 19 YEARS OLD AND HAD ONCE SUFFER WITH LEG ULCERS ABOUT 2 YEARS NOW AND THE ONLY ADVICE I CAN GIVE YOU IS TO KEEP THE LEG ELEVATED AND DRINK LOTS OF WATER, YOU SHOULD ALSO TALK TO UR DOCTOR ABOUT A MEDICATED LEG BANDAGE BY THE NAME OF UNNA BOOT WHAT IT DOES IS PULL OUT ALL THE INFECTED THINGS IN UR LEG I KNOW ITS NOT GONNA BE EASY I WENT THROUG HELL WITH IT AND I HAD TO GO TO PHISICAL THERPY BECAUSE MINE WAS REALLY BAD BUT THEN AGAIN IT COULD HAVE BEEN ALOT WORST. IMA KEEP U IN MY PRAYERS U BE BLESS AND I HOPE U RECOVER IN JESUS NAME FAST.

Hi Anndis good to see a post from you! The advice about the Unna Boot is good info for Celina. Juanita

Hi, I'm new to the group, and I just wanted to say Hi. I'm 37 yrs.
old, married with one child, who is three.
Unfortunately, my Sickle Cell has advanced very much. I have many
MANY problems! Need hip replacement, eye problems, spine problems,
liver problems, etc, etc... I had a question to all. I just started
suffering from leg ulcers, and I wanted to know if anyone has any
advice for this. I have gone to the Wound Care Centers, but I feel
it's a waste of time because they do what I can do at home. Their
supplies are just better! I suffered from one on my foot last year,
(my very first), and had a bad time with it, and alot of pain. Now,
I have one on my ankle, (same leg), and I don't want to go through
the same thing again! Please tell me of your experiences, so I won't
feel so all alone. My husband is very helpful, but of course he
doesn't completely understand, and I have a three yr. old, so that is
hard since I have to be on my feet alot.
Finding this group is like a answer to a prayer, because it's very
hard to find someone to talk to about our disease. After a while,
they get tired of us always talking about what hurts that particular
day, or what new problems we have.
So, that's it. Please let me know what you all think.
By the way, I would love to join in the chat room if you get it up
and running. I think it's a very good idea, to talk in real time.
Thanks in advance.

HEY CELINA WELCOME TO TE GROUP, I'M ANNDIS 19 YEARS OLD AND HAD ONCE SUFFER WITH LEG ULCERS ABOUT 2 YEARS NOW AND THE ONLY ADVICE I CAN GIVE YOU IS TO KEEP THE LEG ELEVATED AND DRINK LOTS OF WATER, YOU SHOULD ALSO TALK TO UR DOCTOR ABOUT A MEDICATED LEG BANDAGE BY THE NAME OF UNNA BOOT WHAT IT DOES IS PULL OUT ALL THE INFECTED THINGS IN UR LEG I KNOW ITS NOT GONNA BE EASY I WENT THROUG HELL WITH IT AND I HAD TO GO TO PHISICAL THERPY BECAUSE MINE WAS REALLY BAD BUT THEN AGAIN IT COULD HAVE BEEN ALOT WORST. IMA KEEP U IN MY PRAYERS U BE BLESS AND I HOPE U RECOVER IN JESUS NAME FAST.
Celina <lewisfamily03@...

Hi, I'm new to the group, and I just wanted to say Hi. I'm 37 yrs.
old, married with one child, who is three.
Unfortunately, my Sickle Cell has advanced very much. I have many
MANY problems! Need hip replacement, eye problems, spine problems,
liver problems, etc, etc... I had a question to all. I just started
suffering from leg ulcers, and I wanted to know if anyone has any
advice for this. I have gone to the Wound Care Centers, but I feel
it's a waste of time because they do what I can do at home. Their
supplies are just better! I suffered from one on my foot last year,
(my very first), and had a bad time with it, and alot of pain. Now,
I have one on my ankle, (same leg), and I don't want to go through
the same thing again! Please tell me of your experiences, so I won't
feel so all alone. My husband is very helpful, but of course he
doesn't completely understand, and I have a three yr. old, so that is
hard since I have to be on my feet alot.
Finding this group is like a answer to a prayer, because it's very
hard to find someone to talk to about our disease. After a while,
they get tired of us always talking about what hurts that particular
day, or what new problems we have.
So, that's it. Please let me know what you all think.
By the way, I would love to join in the chat room if you get it up
and running. I think it's a very good idea, to talk in real time.
Thanks in advance.

My daughter has jaundice to her eyes whenever she is tired and need to rest. It goes away when she is well rested. She is always pushing herself to the limit. But that is how I can tell to start nagging her to slow down.

Betty

In a message dated 3/15/2007 6:27:19 PM Eastern Daylight Time, codeblu3002@... writes:

Hello everyone Im sorry havent been around for a while. I just have a
question, Im experiencing some yellowing in my eyes, does anyone know
what I should do, if I should be worried at all as SC patient. Please
advice, Im kinda worried.

Question: What causes yellow eye color or jaundice in sickle cell patients?

Answer: The yellow color of his eyes is due to his sickle cell disease. The sickle red blood cells break down quickly as the blood moves around the body, and the hemoglobin released from the red blood cells is converted to bilirubin, which has a yellow-orange color. The bilirubin is normally cleared out of the body through the liver and then out the kidney into the urine. People with sickle cell disease have more
bilirubin than normal people.
If you see his eyes getting more dark yellow than usual, the first thing to try is to give more water to drink and flush the bilirubin out the kidneys by urinating more. That extra fluid passing through his body should make the eyes a lighter yellow color.
If the yellow does not get back to usual with more water, then probably something is making the red blood cells break down faster than normal. This could be caused by infection or sickle red blood cells getting trapped in lungs or other parts of the body, and he may need to get to a doctor.

Hello everyone Im sorry havent been around for a while. I just have a
question, Im experiencing some yellowing in my eyes, does anyone know
what I should do, if I should be worried at all as SC patient. Please
advice, Im kinda worried.

Jay this makes me think of when you go to the dentist my daughter has to tell him she has SCD. If he extracts a tooth she has to take an antibiotic before and after the extraction. here is some info I found for you. Let us know what you decide. Smile! Juanita

An autoclave is essentially a pressure cooker primarily used in the medical field for sterilizing medical instruments. An autoclave must maintain a temperature of at least 246 degrees for 30 minutes in order to fully sterilize the equipment.

There are several different kinds of autoclaves, all acceptable to use in the sterilization of the equipment. It is a good idea to ask to see the autoclave. Is it clean? More importantly, was the shop personnel more than happy to show it to you, or did they act like they had something to hide?

Also, keep in mind that the presence of an autoclave does not mean effective sterilization. Autoclaves need to be regularly tested to ensure that they are working properly. latest spore test. These results should be NO MORE than two months old.

Standard medical latex gloves should always be used. Another point worth mentioning, though: Do the gloves fit properly? If the gloves are too big or too small, the artist runs the risk of either poking a hole in the gloves or tearing them. All it takes is a pinhole to run the risk of cross contamination.

Granted, this is more for the safety of the tattoo artist, but no one wants an infected tattoo artist working on them. If the tattooist doesn't care about their own safety, why would they care about yours?

In a message dated 3/15/2007 10:23:35 AM Eastern Daylight Time, Betty55111@... writes:

Hello Jay,

Glad to hear from you. About tattoos I am not much help because I dont believe in them for anyone. My granddaughter has one and I cried when I saw it. I would be really nervous if my daughter who has SCD had one especially until it healed anyway. But you know that is the thing today and I am really old fashioned and overly cautious. Betty

Betty I know exactly how you feel on this one ! LOL! Jay you should ask your DR if there are any special concerns you need to be aware of and if there are special precautions you need to take before or after you get your tattoo. Please make sure the place is safe health wise that they use sterile equipment I.e. needles and that they wear gloves. If you don't go to a tattoo studio or the tattoo studio doesn't follow precautions like using sterilized equipment or if it shares ink between customers, you're putting yourself at risk for getting viral infections such as hepatitis, bacterial skin infections, or dermatitis (severe skin irritation).Because tattooing involves injections under the skin, viruses such as HIV and hepatitis B and C can be transferred into your body if proper precautions aren't followed. For this reason, the American Red Cross and some other blood banks require people to wait 12 months after getting a tattoo before they can donate blood. Hope this helps if
I find any other info I will pass it along. Take care good to hear from you Love Juanita

Hello Jay,

Glad to hear from you. About tattoos I am not much help because I dont believe in them for anyone. My granddaughter has one and I cried when I saw it. I would be really nervous if my daughter who has SCD had one especially until it healed anyway. But you know that is the thing today and I am really old fashioned and overly cautious. Betty

Johnathan, I got the same message when I went there. I know what you

SORRY BETTY, I WENT TO THE WEBSITE BUT COULN'T FIND THE CHAT ROOM.
MAYBE I DID SOMETHING WRONG? I'LL TRY TOMORROW. SHEILA

Sheila I can go back in for a few minutes

Hi, I'm Celina. New to the group. I'm 37yrs old, married with one child. I suffer from sickle cell very much. The older I get, the worse it gets. I'm really glad I found this group. I really need to be in touch with other adult sicklers. I noticed that someone was talking about having a chat session. I am DEFINITELY interested in that. If anyone else is, please let me know.

I also have a question: Does anyone suffer from leg ulcers as an adult? This problem is new for me, and I need all of the advice I can get. It's getting really bad for me, and changing my lifestyle. With a three yr. old, it's EXTREMELY hard. So, PLEASE, give me all the advice you can give.

Thanks in advance.

Hey all.
I've checked places for chats. As far as I can tell, we all need to
be a paying customer to the same website to create a decent chat
room that is not surrounded by unwanted materials.
I've created Many in Aol in the past. They are great. But about
those free sites. My McAfee Site Advisor always warns me when
something is not safe for my computer to visit or download. Those
free sites need to be installed and anything free comes with a lot
of ads and spam and other things that can slow down and even damage
your system. Also, your information is sold to other places and you
start to recieve junk mail.

Let's do it!!! Is this Friday good? Betty did you set up that chat
site you were telling us about? Do you have to download anything to
use the chat room? Let us know and we can get the ball rolling. Love
to hear from as many people as possible and we can have a good 'ole
time getting to know each other better. Take care all. Sheila

Jay. What are her platelet levels like? Does she heal fast?

Johnita, I have a son who has problems bedwetting. In asking at
Sickle Cell Clinic I was told, to set alarms at different times to
help remind him to go in the night. It works except when he is
really tired or if he is sick and on pain meds. Since she is so
young you might have to wake her in the night at different intervals
so you can figure out the approximate time she has her accidents.
Pullups are great of course. Best wishes Kathy

Hi Everyone,

I have a question about my 7year old. She constantly wets the bed and her doctor's say it's because of her kidneys (not concentrating urine?). Anyway, I was wondering if anyone else had this problem with their little one and if so, could you provide any tips that would be helpful?

Thanks so much,

Johnita

Johnita,

The funny thing about sickle cell is that some things develope super fast and others very slowly. I had an adult sized heart by age ten but did not growth spurt till well after collage.
But also,
Don't don't forget that your child is a child first and has sickle cell second.
Bed wetting can go off an on all through their elementary years. A simple solution is to start regulating her evening drinking habbits. No drinking before bed.....So meds and anything else about two hours before bed time. Bathroom visit before bedtime. And no midnight snacks that contain fluid. No milk and Oreos!
Nightmares, stress and a full bladder are usually reasons kids wet the bed. Her muscles will step up to the challenge of late night drinks and stressful dreams eventually. But till then. Shut off the tap at an appropriate time of the evening.
You might also try asking her on occation, separate from this regiment, during your quality time with her, if anything is bothering her. Children often worry about things and never say anything to their parents.

Best wishes to you Johnita,

Jonathan.

Click here: Black Doctor :: Content - Celebrities and Sickle Cell

This article is from Black Doctor Web site. I thought I would share it with everyone.

Betty

Nice,very nice Ms Betty, great information here.
Sweetooth

Luetin - which is found in leafy vegetables, kale, spinach, collard greens) is highly concentrated in the macula of the eye. It helps block out visible blue light. The blue light is one of the major causes of light induced damage to the eyes. Many scientific studies have shown that Luetin with regular intake can prevent macular degeneration. Besides preventing the condition it may be able to stop or even reverse existing macular degeneration by increasing the density of the macula pigment . 6 milligrams is the recommended dosage. I take 20 mg.

Also Vitamins C, E, and Beta carotene they are very high potency antioxidants.As always, diet plays a critical role, so you must increase your consumption of legumes, yellow vegetables, blueberries, cherries and foods rich in vitamins E and C. You should be taking a vitamin supplement of A, C, and E and Zinc every single day. In addition, beta-carotene is the best thing to take for your eyes and carrots are full of it. Grapeseed extract is another powerful antioxidant that protects against free radial damage. Last but not least Ginkgo Biloba, which increases circulation in the smallest vessel of your blood vessels and restores blood flow to the tissues of the eyes.

Sheila if you don't want to take all of these then take Bilberry and Luetin they are safe and I am sure you wont have any problems in taking them. Take care Juanita

In a message dated 3/9/2007 12:50:41 AM Eastern Standard Time, jcricardo14@... writes:

Dear Friends,
My name is Richard Thompson and I live in Louisville, Ky... I had
a friend named Ruthie Thomas who has Sickle Cell anemia. She is a
Christian and came from a strong Christian family. She lived in Fort
Knox Kentucky and got marred and moved to Texas. I lost contact but I
wonder if anyone would know of her. She has a twin brother who
doesn't have Sickle Cell Anemia. I was looking at my college
newspaper. My picture was taken as a gradating senior. She is in the
left of the page. She got married and moved to Texas and that is the
last I heard of her.

Welcome back Richard I dont know your friend Ruthie but she sounds like a lovely person I hope you can connect with her again. Juanita

I hope everyone is doing well, Not much activity on the board .I am
feeling better everyday. I am still very tired though. Taking
multivitimins do very little for me as far as offering a little more
energy. The subject of "fear" of our disease came up. For me
personally, I am not afraid to admit certain fears that I have.
Maybe not a fear per-say, but sometimes it's the fear of the
unknown. Like when is the next crisis going to strike? or Am I going
to start feeling better before the weekend because I have plans? My
fear last year was having a crisis the week we went on vacation.
When I was a child, My siblings would go swimming at the local
public pool. I was so afraid to go because I knew if I went into the
cold water, I would hurt and ache and probably end up in the
hospital. I didn't want to run too much, or over do it. Most of my
childhood fears have subsided because I know when to say STOP when I
feel myself going down. Johnanthan, Somtimes we say things when we
are vunerable and they may not come out the way you want them to.
Don't worry about it. You have a lot to offer the group so go ahead
spill it all out, that's what we're here for. I just wanted to add
my opinion on the matter. Anyone else want to add anything??? Come
on speak up! I miss reading all the interesting tings people have to
offer the group. Well, I have to go. Take care all, Sheila

Dear Friends,
My name is Richard Thompson and I live in Louisville, Ky... I had
a friend named Ruthie Thomas who has Sickle Cell anemia. She is a
Christian and came from a strong Christian family. She lived in Fort
Knox Kentucky and got marred and moved to Texas. I lost contact but I
wonder if anyone would know of her. She has a twin brother who
doesn't have Sickle Cell Anemia. I was looking at my college
newspaper. My picture was taken as a gradating senior. She is in the
left of the page. She got married and moved to Texas and that is the
last I heard of her.
I wonder what happed to her because she was the first person
I met who had Sickle cell anemia. It was back in Spring of 91 at
Eastern Kentucky University, I was upset because I wanted to join an
African American fraternity and they denied me because I had sickle
cell in Jan 91, However, in February during Black History month, they
helped a African American sorority in a fashion show . The show was
to collect money for the research and cure of sickle cell. I was
talking to this African American woman and she told me of Ruthie, I
asked her to make a connection. Not a love connection but a
connection with another person with SCA. We meet a few months later
and exchange stories and concerns. She come to my college graduation
because it inspired her to attend college.
I have lost track of her and just wanted to know how she is
doing. If are Ruthie or anyone who knows her, please give her my
information.
Your Brother in Christ
Richard.
My email address is (jcricardo14@...,) and my cell is Cingular
at 502-418-1270

Hi All,
I'm glad you liked the little song Sunshine. I like to help people
forget about their worries if I can.
I was talking about how I viewed my health before. I feel the need
to remind, a certain someone, and let you all know that the surgery
I whent through for my seizures did have an impact on my emotion
center. I've been under tremendous stress in the past months and
then my pet died. When I said I was afraid of my illness, I was
extremely overwhelmed and at that moment very unhappy and
vulnerable. I realized that I don't need to excuse opening up to
you all but I think that those words could be misconstrued by those
closest to me.
I am attempting to fix a lot of what is wrong in my life and what I
said should not be considered seriously. Just like everyone else, I
have my bad days and my good days and I hope that my words on that
day are not as negatively impressionable of my personality and
intentions as I think they are. I have to work hard to circumvent
the negative after affects from my surgery. I am not always
successful. Fear of my illness has never and will never be on of my
issues. Proof positive, I have a great new job, that I worked very
very hard to get (despite how I was feeling), and I am taking every
measure possible as to not let my illness interfere with my status
there as it has done so many others in the past because of my
ignorance to my own health. I'm working towards a day where I will
learn to damper the intense feelings I get when the damn overflowing
with sorrow.
And I hope and pray that none of you were influenced and are never
afraid of you're sickle cell. It is something we have to deal with
and nothing more. Thoughts like I had before only hold you back.
Jonathan.

In a message dated 3/5/2007 12:21:03 AM Eastern Standard Time, sunshinegal7874@... writes:

Juanita, I asked my doctor about the
alternitive meds for my eye. The doctor advised me not to take them. I
didn't get a clear reason why. I don't think he believes in herbal
therapy. Can you please remind me or find the posts and I can re-read
them because I am willing to try anything to help strenghten my eyes.
Nice pics Johnathan, your girl is very pretty. Thanks for the song. It
made me smile!!!! I'm off to bed. I write more tomorrow. Sheila

Sheila they always tell you not to take herbs and sometimes even vitamins Smile! I can understand why you really do have to know what you are taking and most DR's have not been trained on holistic/alterantive medicine . I take daily Bilberry and Luetin, and a few other things. as I said they wont guarantee that my retina will not detach but they are both very good for your eyes. I have a few herbs and vitamins that I take and I know they work for me. I take 120 mg of bilberry you can start with 60 or make a decision what works best for you.

Bilberry, increases the resistance of blood capillaries and reduces their permeability. Bilberry contains anthocyanosides which can help several visual disorders. During World War 2 doctors started using Bilberry to treat night blindness, severe myopia (I have this) retinal problems and chronic visual fatigue. DR's in Europe and SA use Bilberry to treat common vision problems. Bilberry, is rich in a variety of flavanoids, which have powerful antioxidant activity and particularly target the tissues of the eyes. It increases blood flow to the vasculature of the eyes and increases tissue and capillary wall strength. When you purchase it look for a standard product with 25% anthocyanosides (anthocyanosides work by accelerating the regeneration of retinal purple (visual purple) a substance that is required for good eyesight, especially at night.

I had all of this info in a folder on my PC and then my PC crashed last summer and I lost so much info so I retyped it from my notes from class. I will give you more info on Luetin and a few other things later. I am very leary of just using herbs without really knowing about them but I can assure you Sheila Bilberry wont hurt you! I use to have a friend bring me Bilberries from a health food store she use to go to and I would make a tea out of them now I just take the capsules. Love Juanita

Juanita,I read the info you posted. Thank you. I will think about
trying them. Sure couldn't hurt. I am so tired. Still recovering from
this mild crisis. I am doing way too much. It's hard to rest when you
are a mom of two young boys. I have been putting the heating pad on
every night. I don't sleep too well at night, especilly when I have a
lot of pain. Well, I must go for now. Hope everyone is fine. Sheila

Hi everyone, I am feeling a little better. I still have a lot of back
pain. Trying not to overdo it. Juanita, I asked my doctor about the
alternitive meds for my eye. The doctor advised me not to take them. I
didn't get a clear reason why. I don't think he believes in herbal
therapy. Can you please remind me or find the posts and I can re-read
them because I am willing to try anything to help strenghten my eyes.
Nice pics Johnathan, your girl is very pretty. Thanks for the song. It
made me smile!!!! I'm off to bed. I write more tomorrow. Sheila

It's been a little quiet on the board. I'm sure someone has something
to talk about. Johnathan was talking about getting a chat session on
Thursday. Anyone interested???? I hope everyone is doing okay. Sheila

I haven't looked into the Manager Settings in a long time. I'll do that now and let Betty Know.

Betty created the group (Blue Crown) so obviously she is the site owner. Betty can create assistants; Moderators (Yellow Crown) to be in charge of certain things. I was planning to get around to doing exactly this, before Allyson made me join here. I wanted to create an orgization w/people who are in charge of specific issues, as a catylist for Expanding Awareness. I AM VERY SERIOUS ABOUT GETTING INTO THE PUBLIC LIGHT.

If we have chats, I think it is important that there be someone in charge of hosting them (start/end sessions) and document anything important that was brought up to review later. Whatever. You don't need to be a moderator to Host a Chat. Mods get to change things in the web settings also. There are a tone of settings that members can access if the manager wishes to have them on the site such as Pole Questions.

I started out as the graphic artist of a Transformers Role PLay group. I did the Site Logo and site colors. I own my own fan group now. It is very organized. I put a lot of effort into setting up a game system where people would be rewarded based on how they posted. I even started to create member of the month Graphics to go up on the main site. But my gen is all growed up and has since lost interrest. So I just write a story there now.

Thanks for your kind words.
Catch you all later.
Jonathan.

Hey all.
Sunshine,
I'm sorry you are not feeling well. I am resilient when it comes to
colds. I do not get sick with cold or flue for more than three days.
But cold weather strikes huge pain in me just being in it for a few
minutes. It seems that there is a major cold/flue going around.
Everywhere I've been has had someone who was very sick. I stay so
healthy from colds because of my constant visits to the hospital.
But I also attack colds when I feel one starting. Lots of tea and
clear flues, yadda yadda. I know you know.

Thanks Jonathan,
I am so sorry to hear about your cat. Animals are amazing. They give a
lot of unconditional love. We lost our dog last year and it was like
losing a family member. He was 11yrs old. As for your girl
leaving...That must be hard. Can you go with her? Follow your heart.
Hang in there!!! I will pray for you.
I was not aware that we had a chat room. Who has to turn the chat room
on? We should try to get a weekly chat going. What does everyone else
think? Sheila

In a message dated 3/1/2007 11:57:42 PM Eastern Standard Time, sunshinegal7874@... writes:

Hi everyone, do you think we can set up a chat around 3:00pm est on
Saturday March 3rd. Let me know. It would be great if we can. PS Where
has Juanita been? Sheila

Hi Sheila I am still around life has been really hectic lately! Smile! A lot was going on but I am here. I sent you an email telling you how pretty you looked and I thought the boys were just so cute they look just alike to me !! LOL! Sheila I had asked if you were having a problem with your eyes? We had 2 Sheila's with us at one time and I couldn't recall if it was you or the other Sheila. Take care Juanita

I was asking about you because I remember you used to contact the
group at least every day. Even if it were to just forward something
along. I didn't see much activity from you so I just wanted to check
up on you. I'm keeping you on your toes girl! I know how hectic life
gets. I would like to get online more then I get to. Yes, I am the
Sheila with the eye problem. I had sickle cell retinopothy. I had
laser surgery on it to stop the retina from dying more. Very painful.
But I didn't lose any more visiion. It is like a shadow clouding part
of my perriferal vision. I can still see good though. Well, I have to
run. Good to hear from ya! Sheila

Hi everyone, do you think we can set up a chat around 3:00pm est on
Saturday March 3rd. Let me know. It would be great if we can. PS Where
has Juanita been? Sheila

www.scinfo.org/ChildSS.doc
"Under certain conditions (i.e., acidosis, dehydration, infection,
and low oxygen. etc.) RBC's containing Sickle Hemoglobin become
rigid, elongated, and sickle shaped. Some RBCs sickle immediately,
while others remain normal for hours before sickling. Most RBCs
containing Sickle Hemoglobin can sickle and then unsick-le. After
repeated cycles of sickling and unsickling, the RBC's become
irreversibly sickled.
Sickled RBC's can become trapped within the blood vessels and thus
interfere with normal blood flow. This obstruction can lead to sudden
pain anywhere in the body as well as cause damage to body tissues and
organs over time.
Painful episodes can often be treated and managed at home with
regular acetaminophen (Tylenol), ibuprofen, or acetaminophen with
codeine and hydration (an extra two to four ounces of water or juice
every hour). Rubbing or application of heat with a heating pad or hot
water bottle to the painful area may also alleviate discomfort."
--------
rod: My question is--does drinking lots of water all the time make a
big difference in pain/crises?
oxygen deficit triggers rbc sickling, so not over-exerting during
exercise.
?Gatorade any other substances?

A chat is a good idea!!

Any night is good for me.

Betty

Hi Jonathan, It would be great to set up a chat session. I don't know
what your schedule is. Usually Friday nights are good for me. We would
have to desigante a time that may be good for everyone. It would be
great of we could get at least 5 or 6 people or more! Come on guys and
gals. How about trying to cooridinate something? What is a good day/
time for everyone? Ps Johnanthan, I was using a figure-of-speech when
I referred to you being through everything. I just meant that you seem
to have a lot of knowlege and a lot to offer the group. Talk to you
all later, Sheila

Ultramagnimus... Aka. Jonathan.

I don't know it all. I haven't been through it all. I'm too young for that Shiela. I'm not exactly telling you to go out and do anything specific either Sweetooth. But, you can make up your own minds.

The blood count should be the Hamata Crit. I don't know all the technical names and initials because my doctors have never used them with me and I remember the entire terms better.

My grandmother just had a Hemaglobin test done. She has trait. Her test came back unable to target levels because of the presence of the trait. Again I don't know the technicall terms off the top of my head. Your hemaglobin could be very high but if most of it is sickled then it doesn't mean very much does it?

FYI. Young children tend to have high levels of Hemaglobin (Ahh the Health of a child). But, I've still showed horible crisis symptoms with a high Hemaglobin level at that age. The Boston Children's Hospital had Reverse Transfused me several times to treat me. Completely replacing my blood with new blood. Adults don't seem to have this issue that I know of. I track my Hamata Crit now.

I research a lot. I've tried a lot of different methods. I've gotten a lot of different advice from people who knew about certain things. I don't have perfect advice to give and I am not rock solid on anything. I talk about what I know.......Just take what you think you need.

I will check out that new medication that was just posted though. I never thought Hydroxy Urea was doing anything for me since I've been in constant pain for the last seven years. "It will prolong your life." is the doctors only answer. He will not adress how to stop my constant pain.

Maybe we could set up a chat room session some time Shiela (and everyone else). That would be great.

hydroxy urea is the gold standard for quality of life with SCD.
of course: no long term data for cancer risk.
check out this video: http://www.drkoop.com/video/93/2013.html
it says another cancer drug decitabine has stimulated HbF where
hydroxy urea had not.
-------**L-arginine**-------
"Currently, researchers are studying a number of new drug treatments,
in addition to hydroxyurea, for reducing complications of the
disease. Like hydroxyurea, decitabine and butyrate (a food additive)
appear to cause the body to make a form of hemoglobin (fetal
hemoglobin) that the baby makes before birth.7,9 Increased levels of
fetal hemoglobin appear to help prevent red blood cells from
sickling. Recent studies also suggest that inhaling the gas nitric
oxide or taking an oral dietary supplement called L-arginine (which
appears to boost the body's production of nitric oxide) may also help
prevent sickling, as may treatment with an antifungal drug called
clotimazole or some blood-thinning drugs.7,9 There has already been a
great deal of progress in medical care that reduces serious
complications and improves survival in individuals with sickle cell
disease. These and other new treatments may further improve the
quality of life in affected individuals."
http://www.marchofdimes.com/professionals/681_1221.asp
--------
It is known that hydroxy urea stimulation of Hb F has quite a
variable response between people. and takes at least a couple of
years to build up.
Has anyone on hydroxy urea kept track of their Hb F %
correlate with reduced crises?
Anyone try L-arginine yet?

Thank you everyone for the pain med input. I am going to ask the
doctor about the morphine 15mg. I need something more effective than
what I take now. I was taking Oxy IR a few years ago and it made me
want to sleep all the time. I couldn't even drive to and from work
without fear of falling asleep at the wheel. I had to stop taking
it. I am not working anymore. After my second boy was born I had to
leave. It was too much. I was a preschool teacher and never got to
sit down. I was "dead" at the end of the day. I applied for
disability and got approved because of all the problems I was having
with my pain, my eye and all that. I do not qualify for any MA
because they say our income is too high. My husband works and with
my social security they won't give me medicaid.We don't qualify for
anything! My kids can't even get the medical assistance. It is a
stuggle. You would think we were rich. It's paycheck-to-paycheck a
lot of times. We make it through somehow though. Anyone have any
lucky lottery numbers??? LOL I do appriciate all the feedback
everyone gave. "Ultramagnimus" is one who has been through it all
and I do thank you for opening up to us. What is your name? Can
everyone take a minute and tell us about yourselves. I have been
away from the group for some time and I would like to be aquainted
with you all. Thanks in advance. Take care, Sheila

You have the right good information but some of these things are
contradictory. Tipically, some things contradictory are unavoidable
Q..std. practice is daily folic acid.
A..Folic Acid is a once a day regiment to boost your imune system. It
does aid in blood cell production but it is not a major catalyst. Take
it anyway to keep from being sick all the time with flues and colds.
For general anemia, you need red meat, green leafy vegetables.
eg. steak and eggs, beef broccoli
A..There is no general anemia. Gentics is specific to family and your
own motabolism. Greens and meets are great for blood cell production
but Iron city baby.
Q..Does vitamin C help absorb iron from non-heme sources?
A..It helps but not by itself. Nature is about chemistry. Viatmin D
goes with C... You need to research what natural foods do this.
Garlic is one. Fish oil, which has omega 3 fatty acids.
This is if you have a normal system. This again is prone to your
motabolism. You may have to be extreme in eating to make this work for
you.
Ask your doctor about X-Jade. It's a much faster iron chealator. You
just drink it. I've had no serious side affects from it compared to
Desferoximine which is Subcutanious chelation.
Q..How high can Hemoglobin level get when you're SS?
normal people are
A..Looking at the Hemaglobin level can be decieving to SS patients. It
dosen't explain how much of the volume is Sickled.
The Blood Count is really what you should be concerned with. If it
falls below 20 you are on a hospital bed somewhere. I become in bad
shape at 24 And most normal people are at 27.
ON your best day you can get into the 30's. This is if you are on top
of your health, eating properly/no junk, and exercising and have very
little impurities in your body such as pain medication and other
legal/illegal substances. Combined with the combination of greens and
meets you just described you could have incredibly high levels. The
human body is incredible.
Q..How about protein powder shakes?
A..Becareful what you put into your body. A lot of these have steroids
in them. You have enough medication issues already if you have Sickle
Cell. Try not to complicate it more by adding too many health products
that have an enourmous amount of chemical combinations. Talk to your
doctor about this.
Q..And if you can raise hemoglobin, does that make you less tired?
A..Yes!!! More blood....More oxygen.....The right mix of fule and
you've got Nitro in your body.

std. practice is daily folic acid.
for general anemia, you need red meat, green leafy vegetables.
eg. steak and eggs, beef broccoli
does vitamin C help absorb iron from non-heme sources?
How high can Hemoglobin level get when you're SS?
normal people are
How about protein powder shakes?
And if you can raise hemoglobin, does that make you less tired?

I don't believe that this is from the trait but that is only my personal belief. The medical stand is that under extreme exertion the trait can cause complications.
None of your Business <tisha_nogue22@...

hello i have the sickle cell trait. now i have heard different stories
about it. i heard you can have problems and i heard you cant. for
years i have been havin terrible stomach and back pains and some leg
pains. i have never been in an accident or anything. i have been tested
for everything under the sun. and i even seen on the news where a boy
died from complications from sickle cell trait. i was wondering if my
problems could be from my sickle cell trait. i have been to different
dr's but they never said to me that this is the problem.

hello i have the sickle cell trait. now i have heard different stories
about it. i heard you can have problems and i heard you cant. for
years i have been havin terrible stomach and back pains and some leg
pains. i have never been in an accident or anything. i have been tested
for everything under the sun. and i even seen on the news where a boy
died from complications from sickle cell trait. i was wondering if my
problems could be from my sickle cell trait. i have been to different
dr's but they never said to me that