Re: Is it worth it?

August 12, 2009

Sunny,

I am sorry that you are suffering so. I don't understand how they could be comtemplating something like carpal tunnel surgery and surgery to correct your pronation when you have serious and severe lung disease not to mention some unknown and uncontrolled type of seizure disorder. It doesn't make any sense.

Tell everyone to back off and concentrate on the doctors who are trying to figure out your most urgent issues. Look after yourself!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, August 12, 2009 4:34:21 PMSubject: Is it worth it?

Today the pain is so bad in my legs, arms and chest. I am having to keep my O2 higher than usual just to keep above 90%. Sometimes I just wonder if it's worth the fight. I guess maybe it's the rainy weather but I feel like I just don't want to do this anymore. They are now saying I need carpal tunnel surgery on both wrists, ortho on my right knee and ankle surgery to correct pronation. Too much, I really mean it's just too much. On another note, Bruce can you forgive me. I keep writing and you keep ignoring my pleas. Won't you please take a moment and let me know we are alright? I am truly sorry I lost my temper. Life is too hard to have someone mad at me. Sorry for being such a downer.

Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04, Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

August 12, 2009

Yes, I believe it is. You do not have to have all those surgeries if you do not

want them. I always ask will this be any better or worse if they cannot say yes

it will make you better and not worse then I wont do it.

Dont dwell on whats wrong look at whats right. Get up each day singing at least

I got up. Look at what you CAN do not what you cant do. Remember always ask no

is only a two letter word and it doesnt hurt at all and it just might be yes...

I am sorry you are going through this at this time but pick yourself up and

brush yourself off and look at all that you do have. I once complained I had no

shoes and then saw a man with no feet is how I look at things.

I mean this not to hurt nor cause you more pain just an idea as sometimes when

we get into the deep well of depression it is hard to see the top of the well

and how to bring ourselves out. Just remember we are all here to throw you the

rope of hope and help.

merry

August 12, 2009

Sunny

Often its best to just prioritize illnesses. I have severe GERD but only

see the doctor annually and saw him today as the course we've chosen is

just continue with 80 mg Nexium. We don't want to test to see if its

working or not. When you then determine the disease or illness impacting

you most then I still recommend getting to the most expert doctor

possible. If that one doesn't meet your expectations, go to another.

Amazing too then the other problems will sort of all into line. Normally

at a teaching hospital they can refer you to others you need, but more

importantly, they often have seen the combinations. I see more doctors

(17 last year, looks like it will be around 14 or 15 this year) than any

human should but it remains clear that PF is whats most important and

controlling. Had I been found to have PH, which fortunately I wasn't,

then it would have become the most critical.

Let me give you another example. My kidneys are at 40%. If I had 20

years left to live they would be a major issue. But, simply, unless they

take a sudden dive, my kidneys will long outlast my lungs. So, all we do

is monitor every four months now. And I just don't worry about them.

>

> Sunny,

> I am sorry that you are suffering so. I don't understand how they

could be comtemplating something like carpal tunnel surgery and surgery

to correct your pronation when you have serious and severe lung disease

not to mention some unknown and uncontrolled type of seizure disorder.

It doesn't make any sense.

>

> Tell everyone to back off and concentrate on the doctors who are

trying to figure out your most urgent issues. Look after yourself!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> ________________________________

> From: " rpickel1@... " rpickel1@...

> To: Breathe-Support

> Sent: Wednesday, August 12, 2009 4:34:21 PM

> Subject: Is it worth it?

>

> Today the pain is so bad in my legs, arms and chest. I am having to

keep my O2 higher than usual just to keep above 90%. Sometimes I just

wonder if it's worth the fight. I guess maybe it's the rainy weather

but I feel like I just don't want to do this anymore. They are now

saying I need carpal tunnel surgery on both wrists, ortho on my right

knee and ankle surgery to correct pronation. Too much, I really mean

it's just too much. On another note, Bruce can you forgive me. I keep

writing and you keep ignoring my pleas. Won't you please take a moment

and let me know we are alright? I am truly sorry I lost my temper.

Life is too hard to have someone mad at me. Sorry for being such a

downer.

>

> Sunny 51 PF '09, Lupus/Sjogrens/ Arthritis/ Asthma '04, GERD '04,

Barrett's Disease '08, Hyperthyroid '08, CAN '09, Hiatal Hernia '09,

Idaho

>

August 12, 2009

If you cannot use a mouse or type there are programs that use voice rec to type

and fill out things on the computer. Check into them.

You need to take control of your health issues and not let them run you around.

I also do not understand them wanting to do surgery on you with all your

problems as I needed to have both my breasts taken off but the doctor wouldnt do

it due to him being afraid of me not surving the surgery or being put under for

it...I asked him to check into just doing a local or a drip where I would not

feel anything but be awake. They did this for my surgeries when I had my

children since I couldnt use the stuff they were using at the time same for my

hysterectomy.

It just makes me so upset that they are putting you through all this but you

need to decide what you need and what you want but remember when a door seems

to closed to you there is always the keyhole or underneath it is a way out...

hugs

merry

August 12, 2009

Sunny

I have no idea what I'm forgiving you for which obviously shows that

whatever it is I either just let it go by or long ago forgave. If

someone does say something ever that offends me I on a personal basis I

respond in private and then go on. If its an information issue or

something of that nature I respond to correct on the forum only so

people won't be misinformed. Now if there's something bothering you with

me or anyone you should just send them a private email.

>

> Beth, I am tired of being bounced from one doctor to another.

The ortho guy doesn't want to touch me because of the seizures, he's

afraid it was the anesthesia but I can barely walk on my right leg

because of the knew. He says get the seizure thing figured out then

surgery. My quality of life is so crappy and yes I know I am feeling

sorry for myself but darnit when does it stop. The pulmo guy is worried

about my heart rate and the side of effects of the propoinal (sure it's

spelled wrong) are terrible. They have me on the highest dose of Lortab

they can give but they are afraid of depressing my breathing with pain

meds. Then there's my wrist which gets worse every day. It is getting

hard to type or mouse and if I lose my one contact with the outside

world, my computer, I just don't know what I will do. On a good note I

now have a service dog who alerts me when a seizure is coming and I know

to immediately sit or lie down where I am at.. He is a Pom/Chi mix and

weighs about 3 pounds but he's not a yapper, very calm and watches me

alertly. I am blessed to have him. I am so scarred up from falling and

have had two concussions since surgery because of seizures. I hate it

that I can not drive for another 12 months. That's 12 months without a

seizure. It just feels endless. I had to see my therapist yesterday

because I feel so suicidal all the time. I am sorry to be such a downer

but there are so many different doctors, so much I can't do and I feel

like a rat trapped in a maze with poison cheese at the end. Can you

talk to Bruce and find out if he will forgive me? He is so wise and it

hurts my heart that he hates me so much he won't answer my posts. I

wish I could take back the words I said but I can't. I am an useless

idiot. I just want it all to stop not.

>

> Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, GERD '04,