financial help?

Forum for Addisons and diabetes related issues.

financial help?

Postby purpburp » Sat Aug 11, 2007 1:58 am

Hi, I have had type 1 diabetes for 11 years and secondary addisons for about 8 years. When i was diagnosed with diabetes i was partway through my electrical apprenticeship and didnt think it would have much effect so i perservered. Although difficult i coped, then came the big blow, addisons. Again i thought id cope, how wrong was i. Ive never known anything like it.
To cut a long story short, i had to give up work, i just couldnt cope as an electrician or various other jobs i tried. Until i stumbled on this website i thought it was just me, i was getting old maybe (im 30) cause i just couldnt control mydiabetes and felt tired all the time and aching and couldnt get myself started in the mornings and people around me just thought i was being lazy so in the end thats what i thought.
My wife works part time and i look after the kids and since not working i dont feel so bad and have slightly better control, but only slightly. However we are finding it hard to cope financially so i wondered if there was any help for people like me, anything im entitled too while i get myself sorted. Or do i have to face the fact that to survive financially is at the cost of my survival health wise. I live in the uk and im due to see my specialist soon.
Hope someone can shed some light. :(
purpburp
 
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Postby SueM » Sun Aug 12, 2007 9:04 am

If you are that tired it stands to reason you are under medicated or on the wrong steroids.
Your endo needs his backside kicked if you are left in that state.
When I was diagnosed I had exactly the same problems so really pushed to get something done about it. The solution was to Change over from HC too a combination of prednisolone and HC.

But if you are unable to work get a sick note from your GP and claim sickness/incapacity/income suport. Also look into DLA.
SueM
 
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Postby purpburp » Sun Aug 12, 2007 2:10 pm

Thanks Sue,

id never even heard of prednisolone before visiting this site. The problem i have is when i was diagnosed i lived in a big city with quite a few clued up doctors. However shortly after i moved to a small seaside town. As you can imagine my specialist doesnt really know that much about the conditions and is very textbook in his treatment ie. 20mg HC a day is what you need no more no less. And most of the time i dont even get to see him its usually one of his understudies.
I also hear from this site that an insulin pump is a good step forward.
purpburp
 
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Postby SueM » Sun Aug 12, 2007 11:33 pm

If your endo doesn't know what he is doing ask to change to someone else at a dif hospital. I did :D It's well worth travelling. I travel over 120 miles round trip as live in a very rural area.
20 HC is very low in dosage. I know for a fact I could not manage on that amount.
Talk to to your GP about increasing your steroid amount try 15 hc in the morning and 10 at lunch time or do 15 then 5 at lunch and 5 at 5 pm.

Why is an insulin pump the way to go? that has nothing to do with being undermedicated?
Be very blunt with your GP tell him you are unable to work due to the fatigue so you want to try a higher level of steroid.
SueM
 
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Postby purpburp » Mon Aug 13, 2007 6:33 am

Sorry sue, i mentioned the insulin pump because i also have a lot of trouble controlling my blood sugars, unexplainable highs sudden lows and also think this has an effect on my energy levels.

I quite like the idea of taking some prednisolone before bed if it will help with feeling alive in the mornings. Ill see what my specialist says this time round about my meds cause i didnt really realise that it was that that might be causing me the problems till i found this site, i just thought i was getting old. Perhaps i could even point my specialist in the direction of this site. :lol:
purpburp
 
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Postby SueM » Mon Aug 13, 2007 9:45 am

Ah but if you get you steroids sorted out you won't get the highs and lows like that.
Also do you carb count and adjust your insulin to what you eat?
If not learn to carb count and that will solve a lot of problems too. :)

I take all my steroids in the morning because that's what suits me IE 5 pred and at the moment 7.5 hc as have an infection normally I take 5 and 5
5 pred is = too 20 HC

Have you seen this site too?
http://www.addisons.org.uk/comms/adshg/page1.html lots of info on there for you too.
SueM
 
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Postby purpburp » Mon Aug 13, 2007 10:58 am

Thanks again sue at last someone talking sense.

My diabetes nurse told me i was wrong to adjust my insulin doses day to day. I refuse to see her now cause excuse my french but i think shes talking balls. She says that i should inject pretty much the same levels everyday i tried telling her that i would be in and out of hospital with ketoacidosis if i did, she seems to dismiss the addisons problem. The only one i dont adjust is my levemir dose.
Id love to learn about carb counting, they only do the course once a year in my area and ive missed this years so could you recommend a book.
purpburp
 
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Postby SueM » Mon Aug 13, 2007 12:31 pm

This is a good site to learn from http://www.glycemicindex.com/

Also the CollinsGem carb counter is good.
I suspect the course you mean is the DAFNE, if so it is the same as carb counting and you do not need a course to learn to count carbs. Nearly all foods have the carb values on them so easy to work out what to inject.
If you have your Levemir correct IE you bs doesnt alter if you skip a meal, your next task is to work out your carb/insulin ratio most start off at 10 carbs/unit of insulin.
My ratio is different depending on the time of day. Just learn on 1 meal for a week or 2 untill you have that meal sussed then go on too the next meal. Only make 1 change at a time or you will screw it all up.
Write down what you eat what you inject and blood sugar so you have a log to fall back on then you can see what is going wrong or right.
Make sure you test before you inject and 2 hrs after.

Your ex nurse wants to go back to school if she doesn't think addison's affects your diabetes. It is a fine balancing act between the 2
SueM
 
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Postby purpburp » Mon Aug 13, 2007 1:00 pm

Thanks once again sue, i think my levemir is correct cause funny enough i skipped a meal today and there wasnt much change.
purpburp
 
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Postby SueM » Mon Aug 13, 2007 11:34 pm

You need to do a proper basal test over a few days.
Miss breakfast 1 day lunch the next and evening meal the next. Then lastly have evening meal then nothing else untill the next morning. If your basal is not correct then your carb counting is a waste of time.
SueM
 
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Postby purpburp » Tue Aug 14, 2007 4:04 am

As originally said in this topic my health is slightly better now im a house husband :lol:
I missed lunch yesterday and my bs was fine and today i missed breakfast and come lunch they were fine. I suppose in a way i already carb count as i have 4 units of novarapid for every 2 slices of toast i have for breakfast and my bs is always good come lunch. Again i have 4 units for every 2 crumpets at lunch (i always eat 6). 2 hours after lunch my bs is spot on however i have to have a small snack or i have a hypo usually 1 hour later. If i inject even 1 unit less, sure my bs is fine 2 hours later but when im due to have dinner my bs is high. Why is this?
Oh and by the way re 'headaches' i took 10mg of HC an hour before waking this morning and woke up and did all the things i needed to straight away, it was great. Could it really have an effect that quick or is it all in my head.
Thanks once again for all your advice and patience.
purpburp
 
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Postby KathyK » Mon Aug 20, 2007 8:12 am

Hi PurpBurp,

Just a quick note. As I stated before I don't actually have Diabetes & Addison's BUT Addison's & Reactive Hypoglycemia. I can tell you if I EVER ate 6 Crumpets at one sitting, Id go Hypo for SURE!!

I control my React. Hypo. by DIET ONLY so my Diet is VERY STrict. Stricter than most Diabetics I know. For instance most of them, can have from 45 to 60 carbs per meal - I can only have 15 grams of Carbs PER MEAL!!!

Except Breakfast, I get to have 30 grams of carbs! But I have to have at least 15 to 20 grams of Protein along with it, Or I go Hypo!!

And to top it all off - I am & have been a Vegetarian for 25 years!! So Protein for Brkfst IS NOT easy to come by. I use Soy Sausage patties as my Protein source in the AM's.

You really need to get with a Dietician who can tailor a diet to meet your Specific needs & Then Stick with it to prevent those lows.

Proper Diet, Testing & Proper Meds SHOULD fix the Hypo problem
KathyK
 
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Re: financial help?

Postby Val_Dur08 » Thu Dec 18, 2008 10:52 pm

ahhh. I live in the US. No, I dont have a job right now...Presently looking. I have a (soon to be 2 year old) little girl. and I have Addisons (and maybe Diabetes too..in the middle of tryin to figure out what it is...had a high glucose reading not the last visit to doc. but one b4 that)and i am 22 years old. and goodness!!...The endocrinologist bill is kickin me in the heiny...Wish they offered help for people like me. Just wondering what to do? :?
Val_Dur08
 
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