update on me

June 29, 1999

Hello everyone,

Have had to be away from the list alot lately, and am now catching up with

things.

It is part of the nearly endless summer here in the Sahara Desert (Las

Vegas) Humidity has been very low too (often as little as 7%). So this is

the part of the year when I generally feel more comfortable. And my body

has been more kind to me lately.

Went through some very difficult financial times during the last 4

months, to the extent I couldn't even renew some of my zillion meds

prescriptions. This turned out to be a blessing in disguise. Two of the

meds, both for hypertension, were part of the not refilled list. I just

took a wild guess that I wouldn't keel over dead if I was off them for a while.

Also lost several pounds because I didn't have all that much food either.

Turned out that my BP stayed pretty acceptable anyway, and an unusual thing

happened. This was the first time I was off anti-hypertensives in maybe 30

years. Well, I had some old Tofranil around. Had taken it before, but

needed double the recommended dose, which creates some concern about heart

function. I re-started on just the normal dose, and curiously, it worked

fine! I suddenly changed from being a " non-responder " with most meds to

actually getting good results, feeling usually better physically, and being

better able to control my life!

It surprised me that some BP meds could have been preventing other meds

from working. When I worked in treatment, it was not uncommon for us to

take patients off all meds for a week or so & re-start one-by-one. This is

called a medication holiday. In many situations, it certainly not a

holiday. The difference between this & what I did was that I did stay on

some basic pain meds. When people do these withdrawals under medical

supervision, they can reveal unexpected drug interactions, some that are no

problem, and others that need to be changed.

So recently I have been doing better, & accepted the board presidency of

my homeowner's association. I serve on the board partly out of

self-preservation instincts and partly because I am a well trained &

seasoned manager. I've made a lot of changes in the community, and am

starting to think about trying going back to counseling on a limited basis

next year. (I need to be certain that I can maintain continuity with

patients, so I need time to find this out, and have to renew my

certification, which will also take some time.

Well, I'm certainly not cured, but I am doing better. While I know not to

give up hope, I was pretty down before the meds response improvements took

place. Am now taking a BP med that seems to have no effect on anything else.

So I am gradually increasing my activity level, trying to avoid premature

overload, but at least I can feel more positive about accomplishing some

things. I am avoiding jumping in over my head as much as possible. As a

matter of fact, I am taking today as a rest day.

It is nice, for a change, to feel more positive & to be able to get back

to doing some things. While I know I could have a rampaging arthritic

attack at any time, and if I don't watch out, I can get my back very

inflamed, it still feels good.

So I wish for positive changes for all of you, and can honestly say to all

that you can get better. Just have to give a bit of caution here.

Ordinarily it is unwise to do a full or partial meds vacation without

medical supervision.

Ken

January 10, 2005

Hershey Dude(s) & Dude-(ettes)! I have 4 follow ups scheduled so far.

I am much more calm probably thanks to being back on Prednisone. I couldn't

beleive my eyes when I saw they weren't giving me that!

Kirk

Re: Update on me

Hi Kirk,

I can tell from your e-mail that you seem so much calmer. It is good you are

comfortable with this Hershey dude. I wish you all the best.

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January 10, 2005

Hi Kirk,

I can tell from your e-mail that you seem so much calmer. It is good you are

comfortable with this Hershey dude. I wish you all the best.

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January 11, 2005

kirk, im glad you are home, dont worry about the emails we understand, I know

first hand what prednisone does to you especially when you are cutting the dose,

it makes you mean, but kirk they should have not dropped you from 20,mg to

nothing, that can cause adrenal failure, are you back on the pred? if you had

only been taking the pred for a few days maybe a week or two then you probably

could drop from twenty mg and not have any long term problems with your adrenals

but if you've been on it for months you might want to check with your doc.

prednisone is one drug not to play around with, it's not like mtx, or motrin or

enbrel or any others, you can just stop them cold turkey if you want , you cant

do that with prednisone. at all.

I tried to make an appt today with a new family doctor, since we moved i need

one here in savannah and so I called and they wanted to know what illnesses I

had i explained stills, but i told her i just needed to see the family doc

cause i hurt my back and I also wanted to get an xray and talk about starting

weight loss meds againl. well she called me back and said the doctor said he

couldnt treat me i would need to see a specialist!! I thinking you stupid idiot.

I need a family doc for colds and flus and small stuff, I do have a specialist

for my stills. anyway she left me that message so I have to call them back in

the am.

take care

Jen

January 11, 2005

I have been on Prednisone non stop since April, and essentially since last

January with two tapering dosages between hospitalizations last year. I know all

about what happens as I have read about this " beautiful " double edged sword we

live on.

I know of what you speak of with Dr's today. I have had the same PCP's (Dr.

Stuka & Dr. Lehnert) (they are a partnership) for well over 25

years. They are outstanding, genuine and great to deal with. They are the no

nonsense type of Dr's. If you don't do what they tell you to do, they will rip

you a new one, but they will also fight for you like you wouldn't believe when

they know you need them! My wife went with me on Monday to see Dr Lehnert (the

two of us (Dr & myself) have very similar personalities) and he was bitching

about how the hospitals and Dr's today only want the easy targets and

consultations. They don't want anything that may make them " work " out of fear of

lawsuits or not measuring up. I agree with him on the lawsuits as I personally

think they are way out of hand and I would never go after anyone who made an

HONEST EFFORT to help me. Today's Dr's are a different breed, and he stated he

would be a hell of a lot happier if he was a F****** Greeter @ Wal-Mart! That is

a direct quote! They treat the obvious symptoms and ship you home.

I am lucky in that I have two great PCP's and my RD (Dr. Kantor) is

outstanding also.All three of them want me to follow up at Hershey as none of

the hospitals in my immediate area seem interested in solving anything more than

the most obvious symptoms. There are some great Dr's here, it is just that they

are outnumbered by the lazy and inconsiderate SOB's

Truth be told Jen, you are probably better off that this idiot didn't take

you on, although I would at least stop by his office and ask to speak with him

personally, just to get to see the look on his face, if nothing else. It is hard

to be a " prick " in person while it is very easy to do so over the phone or

online. I have dealt with some " Dandies " (Trust me, if there were no children on

this list that would NOT be my word of choice there!) this year, but have found

some really excellent ones in the process. I can honestly compare Dr's to my

industry. I know well over 150 mechanics/technicians. Out of that lot, I work

with 2 and we are in the process of hiring a 3rd who is without experience(High

school tech student), as I prefer to train them from the ground up. Out of the

rest of them, I have worked with maybe 25 of them. Out of the 25, there are 3

that I would allow to work on any vehicle my wife and kids would ride in. The

rest of them to me are butchers & parts changers. For every truly good, well

educated and competent technician I know, there are at least 20 that don't

deserve to touch a wrench. No joke. Maybe I am being a bit harsh on my own

industry, but when you take a garage association with over 200 member garages

and you can't get 8 techs to sign up for some advanced classes at a technical

college at night there is something drastically wrong. I have had some cars in

recently from garages that I know and I hate to bite my tongue but they

shouldn't be allowed to ship this kind of garbage work out the door. Someone

will get killed sooner or later, and trust me, some of the things I see wrong

are beyond basic, beyond common sense! Once you think you know it all, it is

time to quit. I know about 10% of what I want to know, and I probably spend more

time reading up on and learning about my field than I do anything else on the

internet. I get an average of 3-500 emails a week from www.iatn.net which is a

technicians network with unlimited resources.

Sorry for the rant. Keep on hunting, you will find what you need! I will also

say a prayer for your husband to get back home! Trust me on one thing, don't

worry about weight, worry about being happy. I keep telling my wife the same

thing. I wish you the best Jen, and thanks for the response.

Kirk (a little over-revved, moderate headache, going nuts after two days as a

" secretary " ! with a shit load of joint pain!!!)