Re: 1st time posting....please don't kick me out of the group

[Guest guest]

First of all, I am very sorry to hear that you have had all those

problems. I can't suggest anything about your physical part, but I can

make some other suggestions.

First, if you were legitimately ill, first with the flu and second with

the diabetes, your company's letting you go, rather than placing you on

extended medical leave, may well have been in violation of the ADA

and/or the appropriate State legislation. I suggest that you contact

your local EEOC and/or a good employment law attorney.

Second, for your eye problems I suggest that you see if the Knight

Templar Eye Foundation can help you. As the Templars are a branch of

the Masons, speak to any Mason you know. If he isn't a Templar, he

probably knows someone who is. If you don't know any Masons--and we're

everywhere, so I'd be surprised if you didn't, even if you don't know

that he is--contact the Secretary of your nearest Lodge.

Good luck!

[Guest guest]

Hi Sharon,

Here I sit thinking I'm living in hell and from your story I'm not!

My heart goes out to you and with you being so young on top of

everything. I feel bad because I can't get motivated to stick to my

diet and exercise but luckily I don't have complications like your

dealing with, I really don't know how you can handle it. I pray your

family sticks by you especially your husband -- as the marriage vows

say 'in sickness and in health' May your story be an inspiration to

me to get off my duff and try to get this disease under control

before it controls me. Your in a worse situation since your body is

fighting everything the doctors are trying to do to help you, have

you tried contacting any of the research groups? I know here in

Dallas we have various organizations that are always looking for

folks to join. What about talking to the folks at Joslin or rather

your Dr. talking to them?

I don't have the words to give you much encouragement just know we

will be thinking of you and hope you can turn around this disease and

get back on road to good health.

Pat T.

Texas

[Guest guest]

In a message dated 12/30/2003 3:01:30 PM Eastern Standard Time,

sharon_529@... writes:

I hope I don't get kicked out of the group for my downer of a message, just

my typing fingers felt good enough to let it all out today.

Hi Sharon,

You are not going to be " kicked out of the group " for your message. If it

helps to vent to the group, please do so at anytime. We are here to offer

support and encouragement.

There have been some great responses to your message.

I don't have an answer for you, but I can and will keep you in my thoughts

and prayers.

Please keep posting letting us know how you are doing.

hugs

Eunice

[Guest guest]

My dear Sharon,

Please know that although people here often post good news, we would

be no help to anyone if that was all we were interested in. I'm not

sure anyone can offer much in the way of advice, anything I can think

of sounds so limited in light of everything you are going through.

All I feel I can do is offer some encouragement and friendship. You

are a very brave woman and everyone has the right to vent out their

frustrations. Better that you vent to us, who can understand a little

of what you are going through. That way you can save your few joyful

moments for your family...the people who really deserve to share that

with you.

Please continue to write to us, even if you don't read everyone's

posts. It can be tough to read about people who are doing well. I

know, I am on a list for people trying to have a baby and it can be

so hard some days to be happy for people who have managed to conceive

when we are still trying and not succeeding.

You may want to look on Yahoo for groups that support people with

Chronic Illnesses...I found this one a moment ago and it sounds very

nice. They also have a telephone number that you can call if you are

doing bad and want to talk.

http://health.groups.yahoo.com/group/AngelsWithCronicIllnesses/

Know that there are people who love you and care for you. This will

sound dumb and simplistic, but try to think of one good thought or

memory a day. Take it out and dust if off a few times in the day -

then when your hubby or kids are due to arrive, bring that thought to

the front of your mind and use it to push out the pain and sadness.

Show your family the " real " you for a few minutes a day. Hopefully

they will react with joy and that will, in turn, give you joy too.

There are a couple of things that I have thought of and found on the

internet today:

There is a man who is allergic to synthetic insulin and he was

starting a campaign (of sorts) to find a supplier of beef/pork

insulin (which he is not allegic to). I don't know if you have tried

the animal insulin, but it may work. I am sending him an email and

copying you on the same email to see if he has found a supplier and

if he can give you any info.

http://care.diabetesjournals.org/cgi/content/full/24/2/411

This website talks about someone who was allergic to synthetic and

animal insulin. They were able to get some relief with antihistamin

pills, but their doctor put them on Insulin glargine (I don't know

what it is, but that's what the article said). Perhaps your doctor

would know what it is and if you have already tried it?

Tender blessings to you and yours, and may the Spirit guide and

protect you.

~ Jayd

[Guest guest]

Hi Sharon, I can't offer any help, just know that we are hear to listen to

the good and the bad. I hope they figure things out for you.

Hugs,

----- Original Message -----

To: <diabetes >

Sent: Tuesday, December 30, 2003 2:58 PM

> Well, I hope I don't get kicked out of the group for my downer of a

message, just my typing fingers felt good enough to let it all out today.

I hope everyone has a good new year. by the way......I am 34 years old.

[Guest guest]

Hi Sharon

I am really glad you decided to post. Are you seeing a Diabetologist or a GP?

I am wondering if they did any ANA testing along with the usual diabetes tests.

Have they tested you for other auto immune diseases? Here they would send to

you to endocrinologist and also to a infectious disease man. At our hospital

they work hand in hand. ID is always involved. The cholesterol and probably

the triglycerides could be elevated because of your high blood sugars that is

not that uncommon. Not getting a proper diagnosis and help can be very

stressful and I certainly can sympathize but please don't give up.

Don't for a minute think everything is always roses with diabetics. Some on

list do quite well but there are a lot of us out here with serious

complications. Diabetes does control my life but I do the best I can. That is

all anyone can do so please don't beat yourself up over this. I am assuming you

are in the U.S. is there any way you can get a referral to one of your top

clinics like Joslin etc?

Please continue to write and vent sometimes that helps.

chant

Outgoing Mail Certified Virus Free NAV 2002

Hi everyone. My name is Sharon. This is my first time posting although I have

been reading all of your messages like a coward for some time now, wanting to

say something but not knowing what reaction I would get.

[Guest guest]

Dear Sharon

I wish I had some advice... I don't. I am so sorry that you are

struggling with this enormous burden. It's good you shared your story

with us, that's what we're here for - not just to celebrate our

successes, but to reach out to each other when we need it. Do know

that you have many friends on this list who will pray for you and

send positive energies your way.

One thing you did mention in your post was this: " I have heard

numerous times on these messages: you control diabetes, don't let it

control you. Well, I'm sorry. I have failed. "

No, you didn't fail. Failing means not doing the things we know we

should/must do to control our condition - like eating the right

foods, exercising, taking our meds, testing, etc. That's not what you

are describing. Don't accept any blame or shame, Sharon. It's not

fair to yourself, or your family, and it won't do any good for you.

It's not your fault that you are allergic to insulin. So just let go

of any guilt you may be feeling and instead focus your energies on

your health and healing.

Also, I wonder if your husband would consider joining a support group

(even online) to help him cope with your situation. I'm sure it's

difficult for him and he could probably use advice and support. Maybe

something to suggest to him?

Keep us posted on how you are doing.

Much love and peace

Jacki

[Guest guest]

Sharon, my first thoughts were to consult with an immunologist to

discover the root of your allergy, if you haven't already done so. I

have some Internet friends who are almost genius level on

physiological functions with immune issues, I'd be happy to pass on

their email addys to you.

Also, I know you must feel horrible. I have mild issues, on one pill

a day of lowest dosage, but even that causes my emotional state to

flucuate. I cannot imagine the emotional state you feel simply from

your physical ailments. But you and your family don't give up! I

have a child that according to medical profession should not be

overcoming her issues because myself and others refused to give up.

Mainstream medicine does not oftentimes do justice to those who

suffer very unusual issues, like yourself. You and your family have

to not be willing to accept the current situation, you all can

research, research, research. Contact every diabetes research center

in the world. Do Internet searches. I say these things only as a

coach, wanting to cheer on your fight. I am 32 yrs old and do not

believe it's time to throw in the towel, I believe you can beat this

thing!

Don't ever feel bad for being down. Ecclesiastes 3:4, " A time to

weep, and a time to laugh; a time to mourn, and a time to dance; "

Note that the joy comes after the hard time. You are in your hard

time now, but a joyful time will follow!

Debi

[Guest guest]

>This website talks about someone who was allergic to synthetic and

>animal insulin. They were able to get some relief with antihistamin

>pills, but their doctor put them on Insulin glargine (I don't know

>what it is, but that's what the article said).

Insulin glargine is Lantus (the one Cheryl had such a serious allergic

reaction to).

Before humalin/synthetic insulin was invented, I was on pork insulin for

many years. It must still be around as it's just the " older " stuff, not

humalin. It came in all the forms (probably still does), i.e., Regular,

Lente, Ultralente, NPH as well as some combo forms.

Since Cheryl mentioned she is on Novolin 70/30, I suspect she might be in

Canada?

Sandy

T1 - 1979

[Guest guest]

So sorry I remembered incorrectly . . . it's Sharon, not Cheryl.

>This website talks about someone who was allergic to synthetic and

>animal insulin. They were able to get some relief with antihistamin

>pills, but their doctor put them on Insulin glargine (I don't know

>what it is, but that's what the article said).

Insulin glargine is Lantus (the one Sharon had such a serious allergic

reaction to).

Before humalin/synthetic insulin was invented, I was on pork insulin for

many years. It must still be around as it's just the " older " stuff, not

humalin. It came in all the forms (probably still does), i.e., Regular,

Lente, Ultralente, NPH as well as some combo forms.

Since Sharon mentioned she is on Novolin 70/30, I suspect she might be in

Canada?

Sandy

T1 - 1979

[Guest guest]

Sharon -

I'm no doctor or medical person but I've lived with Type 1 diabetes for 24

years and my heart dropped when I read your post . . . made me truly wish I

could wave a wand and " fix it. " Your story made me think of a few things,

in no particular order . . .

What do you eat? In the days before insulin, the only treatment for T1

diabetics was an eating style of " near starvation. " Nowadays, a low carb

(sometimes very low carb), Atkins diet-type approach is helpful for many

diabetics, i.e., very little to no bread, potatoes, pasta, rice, etc. and

heavy on salads, meat/fish/eggs, low (or no) starch veggies, etc. Stuff

that doesn't raise blood glucase as far or as fast as carbs do. Such a way

of eating may or may not be of great benefit for you but it's something you

can do yourself to experiment.

I'd wonder, as a couple others mentioned . . .

-- if diabetes is your only diagnosable disease or if other things are now

complicating the matter.

-- if pork or beef-based insulin would work any better than the

synthetic/humalin ones. I was on them for years before the synthetic was

invented and suspect they are still available.

If I or a loved one were in your situation, I'd look into the possibilities

of:

-- anti-rejection drugs? (since your immune system is fighting against the

insulin)

-- islets transplant? (Islets of Longerhorns - the insulin-producing cells

of the pancreas). Such transplants have been done successfully (to reverse

diabetes) here at Univ of Wisconsin Hospital and other research hospitals.

-- pancreas transplant?

You mentioned that you are on Novolin 70/30 . . . are you in Canada? That

is a very different health care system than ours in the US.

I've been in some of the places you are and can't imagine having to

continually deal with the problems and symptoms of super high blood glucose

without respite. Don't give up yet.

Sandy

T1 - 1979

>Hi everyone. My name is Sharon. This is my first time posting . . .

>Well, I hope I don't get kicked out of the group for my downer of a

>message, ......I am 34 years old.

[Guest guest]

> -- islets transplant? (Islets of Longerhorns - the insulin-producing cells

> of the pancreas). Such transplants have been done successfully (to reverse

> diabetes) here at Univ of Wisconsin Hospital and other research hospitals.

> -- pancreas transplant?

>

> You mentioned that you are on Novolin 70/30 . . . are you in Canada? That

> is a very different health care system than ours in the US.

I don't know either if Sharon is in Canada. I am in Edmonton, Alberta,

Canada, and here in Edmonton is a world renowed diabetes centre that I

believe did the first islet cell transplant and is heavily involved in

this area. I deleted Sharon's post so I cannot contact her but if she

reads this post maybe she could let the list know if she indeed is from

Canada and which province. Maybe the specialists here could help her.

margo

[Guest guest]

According to a documentary I saw on (I think) Discovery Health, there

was a doctor in NZ who had great success in transplanting pig islet

cells into humans. The NZ government stopped the program in fear that

pig viruses could be thus transmitted to humans, and the doctor moved to

Mexico where he continued his experiments. Anyone know what has come of

that?

(One of the problems of human islet transplants is that it takes 3-5

donor pancreases to harvest enough islet cells for one person. The

problem with islet cell transplants in general is that the patient must

take anti-rejection drugs for the rest of his/her life. So, either way

the person is going to be on medication for a lifetime. Furthermore,

sometimes after a few years the islet cells fail, and the patient has to

go back on diabetes treatment, AND will still have to take

anti-rejection drugs. Thus the procedure would seem to contradict the

First Hippocratic Law.)

Re: Re: 1st time posting....please don't kick me out

of the group

> -- islets transplant? (Islets of Longerhorns - the insulin-producing

cells

> of the pancreas). Such transplants have been done successfully (to

reverse

> diabetes) here at Univ of Wisconsin Hospital and other research

hospitals.

> -- pancreas transplant?

>

> You mentioned that you are on Novolin 70/30 . . . are you in Canada?

That

> is a very different health care system than ours in the US.

I don't know either if Sharon is in Canada. I am in Edmonton, Alberta,

Canada, and here in Edmonton is a world renowed diabetes centre that I

believe did the first islet cell transplant and is heavily involved in

this area. I deleted Sharon's post so I cannot contact her but if she

reads this post maybe she could let the list know if she indeed is from

Canada and which province. Maybe the specialists here could help her.

margo

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Hope you come back soon!

_____

[Guest guest]

>(One of the problems of human islet transplants is that it takes 3-5

>donor pancreases to harvest enough islet cells for one person.

It is hoped that stem cell research will help solve the shortage.

>The problem with islet cell transplants in general is that the patient must

>take anti-rejection drugs for the rest of his/her life.

I must take insulin for the rest of my life. I'd gladly trade it in along

with the diabetes and all its none-too-pleasant realities and possibilities.

>sometimes after a few years the islet cells fail, and the patient has to

>go back on diabetes treatment, AND will still have to take

>anti-rejection drugs.

Nothing is without risk.

Sandy

T1 - 1979