For Patients

Hi!

If you Google- MS Spoon Theory, you will be able to read a very compelling story of how a woman with MS tries to define what it actually feels like to have the disease.  I refer to it all the time in my life when talking to the people who have read it.  I hope you take a look-I was going to try to put it here somehow, but it is easier and prettier if you go yourself.  Daniel, you may even find this helps in communicating about chronic pain.

Kat

Have a good day!  'Thursday's child has far to go...'

Good Afternoon All~

Kat, MS spoon theory is great! I use coins. Spoons work better.

Daniel, there is an online writing outfit I've taken many classes and enjoyed them all.  writers@writers.com 

This morning, I watered the palms before the potential frost tonight! Soaking the roots helps, we're told.

Never thought I'd get so much use out of my turtlenecks and sweatshirts.

keep warm all you northerners
and we southerners, too
Katiea

Feeling angry, melancholy and poetic-

Busy people all around
Busy people in the town
Busy people doing work
Busy people have that perk
Busy people having fun
Bust people on the run

I am watching from my home
I am watching all alone
I am watching them at ease
I am watching how they breeze
I am watching with a tear

They're taking it for granted, I fear...



Home alone missing yet another event.  I CAN write actual poetry, but simple seemed best...

Have a good weekend.

SadKat

Sadkat -- Your poetry expresses some of what I feel quite often.  Thanks for writing it -- for yourself, of course, but also for me and others.  I hope you feel somewhat better soon.

My own sadness is about my son, daughter-in-law, and grandson being home in Shanghai -- on top of my usual melancholy of having to live with my illness and pain.  I do feel physically better than I did last week but have some lingering viral symptoms and arthritis pains.

We did Skype with them last evening.  They got there okay, are obviously jet lagged, and both parents need to go back to work today (Monday there).  Griffin (grandson) who usually talks/relates to us on the computer when we Skype totally ignored us this time.  My wife and I decided that he was likely sad and angry with us for suddenly not being physically available to him -- our best guess.  My son had no better explanation.  We assured him that the reaction is normal.  Hopefully Griffin will be willing to talk with us soon -- we call via Skype once a week. 

I hope my other SATBP friends are doing reasonably well this weekend.  I, as usual, send my healing energy, prayers, and other positive feelings and thoughts to each of you.

By the way, I am sorting through financial materials in preparation to seeing our accountant in a couple of weeks. UGH!!

Your friend, John.

Hi

Sigh.

I'm with you, Kat. And John.

I got a speeding ticket on Friday. In taking the class (online) to get rid of the points, I realize I'm so fatigued all the time that I'm often driving impaired. That's one to sit back and ponder. I can't read. Now I can't drive.

Damn.

This too shall pass. Is that true? Even if I have energy when I start out...there is always the coming back. When I might be really tired. I learned when you are fatigued, your eye muscles tire, which affects focus and peripheral vision. So often lately, I've felt like I'm living a dream. Hard to remember things.

That's fatigue.

I should know that.

I've been resting for three days and I'm still bleary.

I've decided to be like Scarlett and not worry about it today.

Not drive, either.

it is always something
Katiea

y.

Good Morning Everyone~

Daniel, I cheer you on. I moved three times in three years. Getting rid of clutter was liberating. Now, I need what I have and have what I need.

Although, a tad bit more energy would be nice.

Oh well. Maybe tomorrow?

take it easy
Katiea

I

Hi Daniel~

Your doctor(s) should be treating you as a whole person. Sadly, few do. That's up to you. Even if my doctors don't treat me any differently, I send them a fax to tell them how I feel...in every way. I don't care if they just file it.  I keep each doctor up with what the other is doing. That's not completely true, but partly, and could be refined to coordinate your care. In that way, you are forcing them to consider you as a whole person? They can't deny they have all the information.

Whenever I've had bad pain, I found it better to get ahead of it. As you said, by the time you take something, it's too late. Easier to keep it away than get rid of it once it's taken hold. But you're in pain all the time. That's drugs all the time. Not easy.

I understand the panic and anxiety. We have so little control. That goes for everyone but those in pain or chronic illness know it all the time. Like life is spinning out of control.

Fight/flight. Panic. Yes. I do believe these things are part of chronic illness. You are not alone there.

Ah, yes. Balance. Sounds so serene. So hard to find when every option is a brick wall. I have many health problems and all of them have a solution (pharma) that I can't take. High cholesterol? Statins give me pancreatitis. Iritis? Steroid drops (and any other delivery method) gives me glaucoma. Low dose naltrexone has given me life over the past two years but also periods of muscle cramps I can't live with.

My MO is to go to bed when I'm sick. When I'm well, I live it up!

Carpe diem.
Katiea

Daniel,

I am one of the queens of pain should you compare life to a deck or a house of cards.  The answer is a question, an answer and a question and round and round and round the carousel.  The latest cause I have noticed on TV is how dangerous prescription drugs are to our society.  One in three Americans takes one Rx and one in six takes three or more or so they say.  These shows are not about street drugs either.  So we have 'celebrities' with tons of money to purchase Rx drugs and then they take lots and lots of them.  They die or end up hospitalized.  The cause of the people who actually need these medications to function is weakened immensely in my opinion.  There are always going to be those who get high or drunk on their own, yet everyone now seems to be getting lumped into the same category: DRUG ABUSER!  All of this filters into the minds of physicians and their lawyers.  We lose the humane aspect of medication.  Now it's a legal battle or a moral battle or whatever battle they want to make it, just so they don't have to prescribe more than 12 pills at once.  Believe me when I say, at one place, I was treated worse than the street junkies!

Our society is confused/unwilling to talk when it comes to healthcare, pain management, dying and aging in my opinion.  Too many hands are in the pot so to speak.  The patient with pain is getting lost.  At some point, also, you lose the energy to keep fighting the battle-sometimes I cancel appointments just because I don't have the will to fight that day.  And just when you think you have found a decent doctor:  POOF!!!!!!!!  He/She morphs into the other kind.  It has happened several times in recent years.

So, Daniel, I have said very little in a lot of words, but the bottom line is we are sc*****!!!!!!


Kat in a fit of pessimism!!!!!   Keep the faith, though...

I

Welcome Daniel and Hi to all my other friends at SATBP
I see the conversation is about doctors. I have never had any luck with specialists but then again I have only managed to get to see two.
Have been having a difficult time this Feburary. It is the last official month of winter and it is a dull and dirty time up north here. Cabin fever really kicks in this time of year and so does my anxiety and depression. Needless to say I have not accomplished that much this Feburary.
The neuro muscular dentristry I am using to control my pulsitile tinnitus doesn't seem to be working and this is upsetting to me. I really had high hopes.
On a more positive note, I have found a bible study group that I have enjoyed. It puts me in a social setting that I do so miss.
Katwoman, have you started your writing course yet ?

Grace and Courage to All
Africa

Good to see you Africa.  February has passed and spring isn't too far behind I hope.  I never thought, either, that a season or a month or barometric pressure could have such a profound other than maybe having a snow day!  I am sorry that all you had hoped for hasn't worked out as you anticipated.  Hang in there; maybe it is a window to something else... My writing class is about half way through.  It has become very good therapy.  Thank you for asking.

Bad head today-4 days of rain predicted!  I never saw one single Oscar movie from last season!  That is sad!

Keep the faith, Daniel.  Hello Laurie, John, Katiea  and my other friends.

Wednesday's child is full of woe...

Kat

Good Morning All~

Good to see you Africa. Hope Spring comes soon for all.

Daniel, I forgot to mention (maybe). I have a therapist and have had one for 25 years. When people ask, I tell them chronic illness is a very heavy load and I need help carrying it. Plain and simple. When I don't want to burden my husband with my fears, I still have someone to tell. To share. For solace.

Also, a clear head sometimes can see where doctors are human and make mistakes or overlook things (or don't want to be bothered?) and point a way I can accommodate the doctors but still get good care for me.

Kat, we're to have days of rain here, too. Water all those plants and trees and sod. For me, the rain is a relief.

Africa, perhaps the benefit of the dentistry will grow? I hope so. Glad to hear about your bible study. I miss mine a lot. Good people generally show up at those things.

wishing you all the best
Katiea

deleted by poster