Ideas Needed | Arthritis Information

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I want to make a sheet I can fill out everyday... ok when I remember.... to help me keep track of how I am doing and all. That way I can give it to RD and hope that it helps her.

 
So... what kind of information should be on the "progress" sheet?
 
I do not want it to involve much writing. I would like to be able to use my laptop to input the information and store the information.
 
So... if ya'll would be so kind in helping me put this together, by providing me with ideas for what to include. Thanks SnowOwl. That is something like I am looking for.
 
 
Joonie, I'm going to get whacked to kindom come for saying this but,
is there any part of your life that is good.

It seems to me from this great distance, that you are concentrating way to hard on the negatives in your life.

When I first came down with RA I was crippled with pain and life did not seem fair.
After two weeks I was in complete despair and many tears flowed, at the third week I just wanted to end it.

Somehow a little voice said to go for a walk. I grabbed the camera and drove to a little coastal walk near by.
 All this was a massive effort on my part as I should not have attempted to drive as I could not even turn my head.

So, off I shuffled, moving one foot six inches, then the next, and so it went for 150 yards or so. That walk took 40 mins to complete and I still had to get back to the car.

All the time I was thinking wo is me when a little tit bird flew out of the bush and brushed my shoulder before settling on a nearby branch. This startled me to a halt as I listened to the happy tweet tweet emanating from the bird while I caught myself saying "what do you want, no body loves me".

With that the bird took flight  and all but landed on my shoulder again, it did make contact, all be it briefly. This just cracked me right up as I burst into tears, I was loved.
I had just been touched by an angle in the form of the bird.

We all have these little birds around us, it might come in the form of song, a sign, a number plate, any manner of things.
Still your self from this forum, ask questions and then wait for the signs, the answerers will come.


My BF and I are planning on working on the same type of project in the next few days, so I'll pass on any progress we make. I've been using this herxheimer reaction tracking chart but I want something that is digital and also tracks my physical activity and use of natural remedies.Joonie; I think your progress chart is a good idea....but I have to agree with Bodak. Try doing one thing everyday that will strengthen your mental out look. Thoughts are like snowballs. They get bigger and bigger and bigger if pushed long enough. Try pushing your thoughts in a different direction. I wish I had a good suggestion that would help you achieve this; but I can't think right now....but I'll give it some thought.
 
I have no doubt that your health is poor, don't miss understand me. I don't mean these comments out of meanness.

Joonie, from your posts, I'm thinking it might not be a bad idea to track your diet/cravings, too.  For one thing, it seems like a few days after you post about orange juice, you have a hard time.  Since you crave it, it seems like you need it, but maybe there is some type of clue there.  If you just printed off an empty calendar sheet from Outlook, you could fill that stuff in and see it at a glance.

I think you are creative, and I think making/working with charts/forms/calendars, while yes, still focusing on your disease, is something that could be positive for you, just because it seems like that type of thing interests you and you are good at it.   

joonie  I have a MySpace account  exclusively for tracking my RA.
 
First I made the chart and kept it in  "my documents" then every day I get out that chart, copy it, and enter it onto my space and fill in the blanks
 
its simple and quick
 
but I would add at least a place for "I feel good about::
otr today I was able to....

Joonie- I dont keep a chart of how bad I am, I keep a chart of how good I am. I also agree with Lovie and Bodak that instead of focusing on the pain of this horrid disease, focus on overcoming the boundaries. Its a good idea to let your Doctor know whats working and whats not though. During the week when hubby is at work and your daughter is at school can you not get out a little with your son and just a small walk in the fresh air( even if its round the garden) and just push the boundary everyday. There is so much more to life than video games and TV. Do you not have any friends in the area that you could visit with or could visit you. I am also not trying to be mean, just a few suggestions as changing you daily activities could be good for you and take your mind off of the pain and discomfort. It works for me. I know there are days where we all need to just sleep and lay in bed and the pain is too great to do much more but life is so precious to do that everyday.

Take care

I do not really focus on my disease. It is just that I have so many unaddressed things that I do not bring up at my RD appts because they are not bothering me at that time or that I like to just think it will get better once meds are working. Which I know for a fact that my neck/shoulders/upper back problem is greatly better when Humira or Remicade is in me.
 
I go places and do things all the time. Even when I am in pain and unable to move. I do it because I know I need to do it. I do not like going outside in the sun, never have since I was a kid. I have always avoided the sun for some reason.
 
It is like this... I want to be better already... after 3 years of trying to find meds that work for me and then each time they work and I am able to feel like I am on my way to being out of this misrable state and then... BAM... I am back to square one and not able to cope with being set back.
Quote:
I do not really focus on my disease
 
Darling, lets get Real!! and this is said nicely, too..
you are Totally TOTALLY Focused on your illness!!!
 
Just go back over this wks posts, you've made.. i mean seriously!!
 
Its become obvious, that you have an extremely high threshold for pain (which can be bad.. like those kids, who feel No pain and don't know when they're sick)
 
Be more honest w/ your Dr... big
You gave us that pain chart, so use it.. don't see any pt, to writing down the meds.. shrug, they already know what you are on.
 
Start focusing on other things, and yeah, gawd i know its hard somedays!!..  start doing a GRATITUDE LIST,
everynight before you go to bed, list 5 things you're grateful for, even if its in your head..
 
Positive Affirmations..
 
and start SLOWING down... when one is constantly in pain, thats the bodys way, of saying hey slow down..
Compromise, make a more balanced schedule..
 
you're lucky that you can get out and about.. don't ignore pain tho.. it just makes one a martyr.. you don't get extra brownie pts, lol , hugs,
 
What are your passions, what relaxes you?
and hey, some of this i'm saying to myself!!! lol
bc we all tend on some days to get really caught up in
"our stuff".. but darlin do be realistic, .. go over this wks posts... talk more to your dr..
 
wishing you the best~
Whispered
 
and also therapy is great!! I highly recommend it for everyone,  even healthy people , giggling!!
Do you have any sort of craft that you can make? I know we have several friends who bead and make jewerly. (That can get expensive though). I know feeling creative makes me feel good about myself....although I really don't have any true talent.
 
What about some comptuer related art? I know we know several friends who love creating avatars. Our beloved Hula has made me several that I keep on my computer. (miss ya Miss Hula!)
 
I love to knit. That's something I can work on sitting.
 
A girl I work with makes these fancy headbands and sells then for like each! I know it's hard to pick up a new craft that is expensive.....but do a little research.
 
 
This past week posts were like my way of getting input back on how & what I should talk to my RD about. I was going to at least attempt to be a little more out there this visit, but in all realness, I probably will not. I am afraid of what my problems will cause me to have to do. Like when I complained about my hip hurting, I got sent off for a nuclear bone scan. When I finally gave in to going to get my elbow about it got me next day surgery.
 
So... ya know... my batting score is not really good.
 
I am afraid of what my problems will cause me to have to do  and probably won't tell my dr.
Above Quote
 
~~~~~~~~~~~~~~~
sSo So  what you're saying is that you just want to
complain and yet do nothing about it??
 
So what, if you have to do more tests , if its all in the
pursuit, of feeling better.. having a more enriching life?..  I'm sorry darlin, but I can't support people, who just want to whine, yet refuse to be Proactive, in their own illness.
 
Sure more tests aren't fun, but too bad, thats how it is, I knew i probably couldn't do an MRI, but at least, i  tried.. I'm getting annoyed.. seriously...
Whispered2008-02-24 14:32:47Hubby claims I have ADD. Because everytime I find some new thing to do, I lose interest. I have took up scrapbooking, crocheting, sewing Hand & machine, needlepoint, repainting littlest pet shop animals, painting, making websites, beading, and several other things I cannot think of.
 
I like to play video games that is one thing I do not lose interest in, but... my hands, wrists and fingers all have to be on good behavior before I can play. Otherwise pain & stiffness sets in.
 
 
All our kids got Animal Crossing for Christmas. I love that game! I sit and play that at night myself. Like when I complained about my hip hurting, I got sent off for a nuclear bone scan. When I finally gave in to going to get my elbow about it got me next day surgery.
 
So... ya know... my batting score is not really good.
 
Quote above:
~~~~~~~~~~~~~~~~~~~~~
 
HOw can you say your batting average isn't good?!!
 
I mean, .. your dr, listened to you, you got
LUCKY..  you got the bone scan and you
got NEXT day surgery for your elbow..
 
Thats exactly what you needed, so to me, thats wonderful.
 
i mean darlin, its time to change your mind channel... and time for Therapy!!
 
(and yes, i'm being a bit harsh today, but my tolerance level is only so much)
 
 

The John's Hopkins website has a form.  I'm not able to post a link from the computer I am on, but it's easy to navigate the website to get to the form.  They have a whole section devoted to rheumatology.  Also, great advice from Bodak and Whispered.  We have to have a light in our tunnel that keeps pushing us forward.  I relate all to well to the losing interest in things that you mentioned.  It's almost as if I go into overdrive taking up a new "project" but once I start it, I feel scattered and unable to focus so I set it aside.  I try to accept the so called "ADD" as part of my illness.  I also understand what you mean when you say you are afraid of what your problems will cause you to have to do.  We don't have the luxury of ignoring our symptoms and unfortunately when we seek help it often turns up yet another  "problem".   Last year it seemed like every time I turned around I added something else to my already long list of physical issues.  It can be really hard to stay positive.  Hang in there.  I wish you many moments of serenity in your day!

[QUOTE=Whispered]I am afraid of what my problems will cause me to have to do  and probably won't tell my dr.
Above Quote
 
~~~~~~~~~~~~~~~
sSo So  what you're saying is that you just want to
complain and yet do nothing about it??
 
So what, if you have to do more tests , if its all in the
pursuit, of feeling better.. having a more enriching life?..  I'm sorry darlin, but I can't support people, who just want to whine, yet refuse to be Proactive, in their own illness.
 
Sure more tests aren't fun, but too bad, thats how it is, I knew i probably couldn't do an MRI, but at least, i  tried.. I'm getting annoyed.. seriously...
[/QUOTE]
 
That above post was not complete earlier while I was replying to your replies back to me. Now that I see it.
 
It is not that I do not want to help myself.
 
It makes me feel like a burden to people when I waste 6 hours of their day just so they can watch my kid and take me somewhere to get a test done and then to cause them to be late for work.
 
I do not like doctors. I can not open up to them. I had a docotor I went to since I was 13 and he delivered my daughter, talk about personal, but I still could not bring myself to discuss any of my issues with him. I just cannot bring myself to trust a doctor. I was probably mentally violated by a doctor when I was a kid. I get flash backs of when I was smaller of doctors holding me down and needles. I do not know where that comes from, but that is the flash back I get everytime I am in a doctors waiting room. My BP goes up when I have to go to an appointment and I am nervous. Even if I have seen the Dr for years.
 
It is not that I am afraid of what they will find it is that I am afraid of them, and their procedures.
 
 
 
Joonie, I think we all have these thoughts occasionally, just don't let them take over.  You have had some good advice and sometimes it is not what we want to hear, so sift through the advice you have been given and take what you need from it.  You should think about doing one of those public speaking classes they really help people to communicate better and lose their fears.  You remind me of me when I feel everything is going wrong, allow yourself some time to wallow, but always remember that a positive mind gives a positive body.  I feel so much better in my day if I have shared a few jokes maybe a coffee with friends etc, this is my escape and I will not let RA dictate my fun time, I leave that for when I am with my DR.  Best of luck love Janie.  here's the Johns Hopkins link
 
I actually think for Joonie an disease activity journal would be beneficial.  That way she can simply hand the journal to her doctor.  Writing down symptoms will allow her to do a better job or organizing herself and preparing herself for an appt.  And writing down the meds will help her remember to take them as prescribed.  I aree with Suzanne that meals and food cravings should be included simply to see if there is a link somewhere.
 
Joonie also write down your questions and concerns as you think of them between appointments.  That way you don't forget them.
 
Joonie, journaling is your first step in taking control.  May I suggest you order the Arthritis Foundations Lets Talk Arthritis kit.  It gives you hints on better communicating with your doctor
Thanks for this. New to this site and was impress with all the feedback.  Need to keep track for dr and this will help to put it together.Joonie, since you have difficulty talking to your doctor, a journal might be a very good idea for you.  But I also agree that you need to put less focus on your disease and negative thoughts in general.  I've always thought you would be a great writer of children's books.  You sound like a fun, creative type with a charming child-like quality that would translate very well on paper.  Have you ever considered something like that?  You really, really need to be able to focus on something other than your disease. 

Joonie,


You might want to think about keeping one page in your journal or notebook that you jot down things you specifically want to ask your doctor. Then, come the day of your appointment, either fax a copy of that page to your doctor, or print off a copy of the page for your doctor and have a copy for yourself so that the two of you can over it together while you are at your appointment.   This helps you not forget anything and also makes it a whole lot easier to communicate with the doctor if you have problems opening those lines of communication on your own.

You are far from being alone in this as far as your fears and reluctance goes.

I keep one page with all my meds listed. One page with all my allergies listed. One page with basic medical history on it. One page with doctors names and phone numbers, emergency contact names and phone numbers. This is all in a notebook. There is a section for lab results. A section for xray, MRI, bone scan, and other types of test results. Then a section with pain scale of 1-10, portion to jot down weather info to see if that plays into flares or not, portion to list joints that maybe having troubles, portion to jot down anything else that may be effecting overall health be it good or bad. Often times just by keeping these simple types of notes you can start to see little trends.

I think others have been a bit harsh with you, as some people process things out loud and it doesn't necessarily mean that you spend every waking moment focussing on the issues or that you are depressed.

Do what works best for YOU and don't worry about anything else.

R.Rheumy, good ideas and good postJoonie your doctor will be able to help you better if you can open up enough to let her know what is happening with you. Any kind of short daily or weekly written thing is a great ice breaker with a doctor. It creates a situation where the doc sees the patient is really trying to get better - I think they work harder for people who try. 
 
Before for your kids were old enough to communicate about a sickness or pain...I bet you spent a lot of time trying to figure them out. Doctors just can't do that.
Here's my chart.

I spend maybe 5 minutes filling it out, at the end of the day right before bed each night. Thanks Jasmine. I will piece that and the others on here together and see what I can come up with.
 
I might have to keep my journal on hubby's computer he has OneNote2007 and in that version you can create tables. I cannot create tables with OneNote2003. Pooey!

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