darn doctors and emotions!

[Guest guest]

I'm pretty much a lurker here, just reading the emails and seeing how

my PA goes....

I had an unplanned dr. visit today, went in just to have the nurse

listen to my heart. Ended up on the EKG and seeing the dr... I was

thinking of all the times you guys have discussed Vit.D and asked how

mine was. (I have monthly blood draws for methotrexate) He was

horrified to discover that neither he (my PC dr.) or the rheumy had

ordered it checked!!! So he drew that too.

I just want to thank everyone for all their posts. It's nice to know

you aren't alone with this crap! :-)

So, a new question...what do you do to keep your spirits up when

things look glum? I'm really struggling right now with a medical

downswing, the divorce doesn't seem to end(no support), the house is

for sale, I have no idea how things are gonna work financially after

it sells or where I'll live, my 18 yr old is being horrid and to top

it off, today I was terminated from my job as I cannot meet their

physical expectations right now. Fill me up with great ideas on how to

stay 'up' during all this emotional turmoil, which is, of course, bad

for me medically! I'm open, bombard me!!! :-)

Sue

[Guest guest]

Dear Sue,

Well I do believe that when it rains it pours and your life seems to be a

perfect example of that right now. I don¹t know just how bad your PA is,

but I¹m hoping you will be on something that will get it under control soon.

Have you tried any of the biologics? I can¹t seem to take them due to

repeated infections, especially in my chest, but I know they work wonders

for some people. Also I¹ve found that Arava really does help me. I¹m not

saying it has taken the pain away, I don¹t think really anything can take

away my pain anymore since my arthritis is so advanced. I also have

erythromelagia, which is a form of neuropathy that causes your skin to turn

bright red and burn like hell. It started in my face, and so did my PA in

my jaw joint. I was told I had TMJ for several years and then it started

spreading to other areas of my body. Now I have PA everywhere, and

Erythromelagia in my face, hands, neck and feet. I think with all of it,

the neuropathy has put me the most on edge. When I was diagnosed with

diabetes, I wasn¹t worried about neuropathy because I already had it, but

still I think it has kicked it up a big notch in the pain department. From

about 4 PM on, I really can¹t do much of anything except burn and elevate my

feet. I¹ve been sick now for 12 years with this damn PA and how I have

diabetes, sleep apnea, asthma, COPD, rheumatoid, and PA, osteoarthritis, and

osteoporosis and well as low vitamin D. I was lucky that I found that out

fairly early and got on the vitamin right away. Now I take it everyday. I

am so sick of doctors, every kind and all the drugs I have to take everyday

to just get by.

I went from working full time with my husband in our business to never

driving, never cleaning, never working, and rarely even cooking dinner, now

that my hands are so affected. I¹ve been in pain management almost from the

beginning due to the TMJ, and I thought that was my savior, but I¹m not so

sure anymore. For one thing my pain doctor of 10 years just moved to

Colorado without telling anyone he was even leaving. They will fill my

drugs at the clinic, but now I¹m looking for another pain doctor, when just

leaving the house is almost impossible. I¹m not telling you all of this to

just complain about my situation, but to let you know that I too feel

overwhelmed so often and somehow I¹m still here.

To top things off, my 26 year old daughter had a major stroke in Feb this

year in an area of the brain that is so rare it¹s been almost impossible to

get a doctor to tell us what is going on. Now we have 3 doctors with

different opinions on the fact that she could suddenly lose her total vision

unless she has brain surgery. We are seeing another specialist next week

with the hope he can agree or disagree with one of the main doctors and put

our minds at ease. The whole thing is very scary and she hasn¹t been able

to work or do anything since this all happened. So far she is still living

alone, at her own request, but I wonder how much longer we can swing it

financially or if she¹ll be able to manage it alone. I can¹t even imagine

her losing her sight now after all that has happened.

For me when things get really bad, I tend to think of everything that is

wrong at the same time and then I get really overwhelmed. As horrible as it

seems, I have to put myself first, just so I can be healthy enough to try

and help them later. *By them, I mean my husband and both my daughters and

my two little dogs. Hope is the main answer of me. I¹ve found without it I

just can¹t face the new day or tomorrow. It¹s hard to keep it going, but I

do my best to try and think positive all the time. It doesn't work everyday

and I have lots of days when I just break down, but without it I just don¹t

have a chance of going on. I try to think of all the things that could

happen to make things work out and to help out our lives someway. Sometimes

I feel like it is just wishful thinking, like ³one day they will have a drug

out that will help me?² But what good does it do sitting around thinking,

nothing is ever going to help me, even if it feels that way at times.

I try to think of 10 things each night before I fall asleep that I have to

be thankful for and I always go over 10 items. It¹s a little thing, but it

seems to help me. I try to pray at night and I try to do meditation during

the day. I do what ever I can to get my mind off the pain, whether it¹s a

computer game, television or reading a book, which I enjoy the most. I got

a Kindle for my birthday a few years ago and it really changed reading for

me because the books we getting to hard for my hands to hold.

My pets are wonderful, but they do drive me crazy at times, letting them in

and out all day. I¹m allergic to cats and most animals, but there are a few

dogs I can tolerate allergy wise. I have a toy poodle and a little Yorkie.

They both have their moments, but mainly it¹s due to the fact they are

getting older and having health problems of their own. Sometimes I feel

like I¹m in a old folks home...lol. I¹m only 55, but I know I look much

older due to all the prednisone I've been on and just the general stress of

the illness these past 10 years.

The most important thing is to have a rheumy that you believe in and that

you know is tops in his field. I went through 8 of them I think before I

found the best one, and he knew what was wrong with me in 20 minutes. The

rest of them didn¹t have a clue after weeks, months and even years of

treating me. Those kind of things help me and help keep me going. I have a

good primary care doctor as well who hasn¹t given up on me regardless of

what is going on with me lately. Believe me it¹s always something with

everything I¹ve got wrong. He never seems frustrated or even irritated with

me at times, when so many doctors only want easy cases. I¹ve met all kinds

of jerks in the medical field that¹s for sure. You really have to shop

around, after all they are working for you. Even if they don¹t act like it

at times.

I don¹t know if any of my suggestions will help you, but I hope you find

some hope somewhere that will help you make it through. A lot of people

have told me that God only gives you as much as he know you can handle, but

that¹s hard for me to deal with sometimes. I feel like he¹s either made a

big mistake or gotten me confused with someone else at times...lol. I try

to laugh as much as I can and stay away from stress when ever I can, though

that isn¹t easy anymore. Sometimes just waking up is stressful.

Remember you aren¹t alone. There are a ton of us out here suffering along

with you, if that helps any. Plus there are so many smart people in this

group, you find out more about your illness from them, then you ever do from

the medical field. It¹s worth belonging just for that. I posted a lot when

I first joined, and I wasn¹t nearly as bad then as I am now. I know some

people do get better, so that¹s hopeful as well. Like I said, for me it all

comes down to hope.

Take care of yourself and I hope things settle down for you soon and you

find someone who understands just what you are going through. Write me

anytime, ok?

Fran in Florida

[Guest guest]

Hi, Sue,

If you are up for it, you might try volunteer work. Helping others might help

lift your spirits. I think the United Way always needs help. There are animal

shelters, museums, churches, just to name a few places that might benefit from

your help!

I do a bit of yoga and qi gong in the mornings and walk on a treadmill in the

afternoons, I think any kind of physical activity helps you feel better.

Getting lost in a good book is a nice distraction from reality, too.

I really hope some good things come to you soon.

Kindest Regards,

Janet

>

> So, a new question...what do you do to keep your spirits up when

> things look glum? Fill me up with great ideas on how to

> stay 'up' during all this emotional turmoil, which is, of course, bad

> for me medically! I'm open, bombard me!!! :-)

>

> Sue

>

[Guest guest]

Hi, Sue,

If you are up for it, you might try volunteer work. Helping others might help

lift your spirits. I think the United Way always needs help. There are animal

shelters, museums, churches, just to name a few places that might benefit from

your help!

I do a bit of yoga and qi gong in the mornings and walk on a treadmill in the

afternoons, I think any kind of physical activity helps you feel better.

Getting lost in a good book is a nice distraction from reality, too.

I really hope some good things come to you soon.

Kindest Regards,

Janet

[Guest guest]

I always try to remember......There are a lot of other people out there worse

off than me.....I wake up thankful I am alive, thank the Good Lord for giving me

that opportunity Thankful I can still get out of bed (painfully, an stiff ) .I

havent been given a death sentence......I have not been told I have

cancer....Yes...when I have flare ups....I wonder why????

I get angry....depressed.....try to hide the skin issues as much as I can. Use

a scooter when I need too. But I am a lucky one. that is how I get through

it...Was diag. with PA over 10 yrs. ago....but I am alive.....