{TMIC} and (RP) Depression from Sally

[Guest guest]

Hello everyone,

For the last few days I have been reading about depression on both of my groups; RP - Relapsing Polychondritis and TM; Transverse Myilitis. I have had both RP, first and now TM and it is not hard to see the reason for our depression at times. The anxiety we face with these diseases are unbelievable at times. It would be one thing if we all of got the same symptoms and knew what would happen but each of our situations are different. If we had Dr.s that understood what we are going through that would be great. Some of us are lucky and have those Dr.s and some are going through trail and error with getting the right dx and getting on meds that work for us. It is hard to understand why we got these rare diseases and even harder to realize how much our lives have changed now from the way we were.

With the horrible pain alot of us suffer, the exhaustion, our concentration getting harder, and etc. no wonder we get depressed. We wonder when this will all end or get alot better so we can get through our daily lives easier. Our so called normal life has disappeared for now and we have to learn how to get by the best we can. We can only hope that our family and friends truely understand what we have to go through each and every day. Most of us are lucky in this but it is so sad when some don't get the support they need. I think everyone we know should walk a mile in our shoes, especially the Dr.s It is hard to discribe the feelings we have in our bodies so the Dr.s know what to do for us.

When we get depressed and don't know where to turn, go to the PC and talk to your group for your answers and support. They truly know how and what you are going through and will do their best to help you. It would be so nice if we could leave our bodies when it gets so bad and unbearable. It is like being found gultiy of being sick and getting a jail sentence. Some get probation, suspended, months and years with parole or life without parole. Seems they ought to hand out striped PJ's when we get our dx but the lucky few are found innocense. We can however be found gulity of another disease when you lease exspect it and alot of us know that too well. Think we can get a stay of exacution more then once? LOL

We need to do what is best for ourselves, no matter what it takes : pain, fatigue, sleeping, etc. and most of all DEPRESSION. It is so funny that both groups have been talking about it and by the end of the day wondering if we will be able to get up the next morning and do it all over again. Our bodies have terrible side affects from meds. and deformidies while we have emotional upheavals that can send us in a tailspin. Guess we have to learn when to eject, crash and burn or to pull out and fly right. LOL So whatever we can learn from our second families, put them to use, if it doesn't work then ask for more ideas.

I know what I have learned in the past few days and I hope I put the words down right so they make some sense. It is funny when you read the postings and it is like looking into a mirror and seeing yourselves in it, huh? The one true thing we all know that seems to help us is laughter, it is FREE, very infectouis and the only side affect you can get is a sore side that aches when laughing. Oh and eyes with tears in them if you have the right dose! LOL

Take care and hope you have a good week. We can all look forward to our cure that is around the corner, I keep praying I find the right one. LOL My thoughts and prayers go out to each and everyone of you for a better tomorrow and as pain free as can be.

Love you all

Sally

[Guest guest]

Sally What can I say, except thank you, you've hit the nail on the head.

take care

dawn

TheNavigator01@... wrote:

Hello everyone, For the last few days I have been reading about depression on both of my groups; RP - Relapsing Polychondritis and TM; Transverse Myilitis. I have had both RP, first and now TM and it is not hard to see the reason for our depression at times. The anxiety we face with these diseases are unbelievable at times. It would be one thing if we all of got the same symptoms and knew what would happen but each of our situations are different. If we had Dr.s that understood what we are going through that would be great. Some of us are lucky and have those Dr.s and some are going through trail and error with getting the right dx and getting on meds that work for us. It is hard to understand why we got these rare diseases and even harder to realize how much our lives have changed now from the way we were. With the horrible pain alot of us suffer, the exhaustion, our concentration getting harder, and etc. no wonder we get depressed. We wonder when this will all end or get alot better so we can get through our daily lives easier. Our so called normal life has disappeared for now and we have to learn how to get by the best we can. We can only hope that our family and friends truely understand what we have to go through each and every day. Most of us are lucky in this but it is so sad when some don't get the support they need. I think everyone we know should walk a mile in our shoes, especially the Dr.s It is hard to discribe the feelings we have in our bodies so the Dr.s know what to do for us. When we get depressed and don't know where to turn, go to the PC and talk to your group for your answers and support. They truly know how and what you are going through and will do their best to help you. It would be so nice if we could leave our bodies when it gets so bad and unbearable. It is like being found gultiy of being sick and getting a jail sentence. Some get probation, suspended, months and years with parole or life without parole. Seems they ought to hand out striped PJ's when we get our dx but the lucky few are found innocense. We can however be found gulity of another disease when you lease exspect it and alot of us know that too well. Think we can get a stay of exacution more then once? LOL We need to do what is best for ourselves, no matter what it takes : pain, fatigue, sleeping, etc. and most of all DEPRESSION. It is so funny that both groups have been talking about it and by the end of the day wondering if we will be able to get up the next morning and do it all over again. Our bodies have terrible side affects from meds. and deformidies while we have emotional upheavals that can send us in a tailspin. Guess we have to learn when to eject, crash and burn or to pull out and fly right. LOL So whatever we can learn from our second families, put them to use, if it doesn't work then ask for more ideas. I know what I have learned in the past few days and I hope I put the words down right so they make some sense. It is funny when you read the postings and it is like looking into a mirror and seeing yourselves in it, huh? The one true thing we all know that seems to help us is laughter, it is FREE, very infectouis and the only side affect you can get is a sore side that aches when laughing. Oh and eyes with tears in them if you have the right dose! LOL Take care and hope you have a good week. We can all look forward to our cure that is around the corner, I keep praying I find the right one. LOL My thoughts and prayers go out to each and everyone of you for a better tomorrow and as pain free as can be.Love you allSally DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sally wrote:

" I know what I have learned in the past few days and I hope I put

the words down right so they make some sense. "

.................................................................

You put the words down JUST RIGHT! They made ALL the sense

to me! Thanks!

blue

................................................................

When Sally wrote this:

" ...talk to your group for your answers and support. They truly

know how and what you are going through and will do their best

to help you. "

blue wrote this. See how it works?

...........................................................

I suffer the symptoms of illness, alone on the ground.

There are people all around who are not alone.

They hold each other up above the ground.

People build support groups like a system of giant ladders.

Some are crowded. Some are virtually empty.

I look for signs pointing to specific ladders.

I discover some with platforms.

.... a place to rest, to learn, to gain strength.

I'll need to resume the climb.

I can depend on others for help, from one rung to the next.

I don't yet know where I am going.

But I'm no longer alone on the ground!

......................................................................

In this group we all have the opportunity to pull others up by the

encouragement we give. As our RP community reaches out with

understanding and wise council, gained by collective experience,

we all benefit.

Thank you for your support!

This has been a public service announcement.

blue

[Guest guest]

Hi Blue

I'm sorry I haven't welcomed you to the group before this but you found a terrific group, I have been here about 3 mo.s and it is great. I like the ladder saying and it is true and the FIRST rung is the hardest.

Glad you agree with what I wrote, I have trouble saying what I want and putting it into words. I limit my words to little to medium size cuz I'm not the best speller. LOL I have a card ( big ) that I write some words on that everybody uses all the time so I can try to write like I know what I am saying!! LOL

Haven't written much lately, I popped my knee 2 weeks ago and it is pretty good now but my right hip has been hurting for over 4 weeks. It doesn't make any difference how I sleep but it hurts and keep me awake. Now it gives me problems on how long I sit in a chair. I have this little swiggly-thing-a-ma-jig in my stomach that lets me sit just so long anywhere before I cann't '"stand" to sit any longer so I have to move. It is somewhat 1/2 way between a pain and not, ha, ha, if that makes any sense. I have had this for about 30 years, yuk.LOL

I hope you have a good 1/2 a weekend and hope you are doing okay. Take care.

Love ya

Sally

[Guest guest]

Sally,

I am really curious, what is the "swiggly thing a ma jig" in your stomach caused from?

Sandy

Haven't written much lately, I popped my knee 2 weeks ago and it is pretty good now but my right hip has been hurting for over 4 weeks. It doesn't make any difference how I sleep but it hurts and keep me awake. Now it gives me problems on how long I sit in a chair. I have this little swiggly-thing-a-ma-jig in my stomach that lets me sit just so long anywhere before I cann't '"stand" to sit any longer so I have to move. It is somewhat 1/2 way between a pain and not, ha, ha, if that makes any sense. I have had this for about 30 years, yuk.LOL I hope you have a good 1/2 a weekend and hope you are doing okay. Take care.Love ya Sally DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

>

> I limit my words to little to medium size cuz I'm not

> the best speller...

Sally

Thanks for the welcome and all the kind words!

....a secret between you and me ... I cheat with my spelling!

Sometimes I write my posts in the word processor and paste to

the board. Or, If I find I'm writing more than just a few words, I

paste to the word processor. Then I run a spell check, and paste

back to the board. Often I just think of another word that I'm

certain of. I guess that's what you mean by limiting your words.

Everyone goofs up on spelling, punctuation, sometime or other.

It's one of the reasons that so many people don't write. Don't ever

let your ideas be lost for want of words!

It important just to get the thought out. You can " clean up " the text

later if you need to. We don't talk in complete sentences. We use

our own words and develop our own style. I like to write the way I

talk. To me it's important to be true to myself. Usually I write off

the top of my head.

The Sally Rap

Keep up the communication.

Send out appreciation

You never know what your words can do!

If I made your day...

You make mine too

blue, to you

[Guest guest]

Sally,

Sorry this post is so long after your original post, but I've been

out of town and have just returned.

I want to thank you for your post and your words of encouragement and

advice. It is hard to live with such a life changing condition and

it gets worse when I feel isolated. This group helps me not to feel

that way.

Hope you are having a good day! Take care!

M

[Guest guest]

M

It takes alot to understand how we need to deal with this disease and living along. I am glad cuz I can be myself and if I want let go for a time, my family doesn't see it. More then anything I try to keep my true feelings to myself so they don't feel so bad about it. I laugh and joke alot and we don't often talk about my disease unless I have a dr. app. or having a problem. What amazes me is that when I am in a dr. I usually end up in tears, guess it is cuz you have a wake up call and you are talking to a dr., discussing YOUR disease, when you want to forget it,huh? LOL I hope this makes sense. The last time I saw my PCP I had my finger stucked for diabetes and they told me I had it, I told them how I felt and they took another test and it was fine. When the dr. came back in he asked why I was in tears, I said I didn't need that ontop of what I already had. I went home and had a good cry and felt a whole lot better. LOL I am sure glad my puppy dog doesn't ask me alot of questions!! LOL Hope I made sense.

Take care and have a good day.

Love ya

Sally

[Guest guest]

Sally,

Thanks for your reply. I too found that I was " letting down " after

holding in. I would usually make it to Friday night and then have a

little crying jag from being so strong during the work week. It's

amazing to me that I'm not even usually aware of how much I've been

carrying, until I get to that point.

Take care!!