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Hey All!


It's been a while since I've posted. I kinda fell into a deep depression over the past few weeks. Another birthday has passed for me. I thought that would bring my spirits up, but no. I've been fighting off a lot of pain lately. I don't know if it's the horrible weather here on the east coast, but something has to turn around soon. I feel like my body is starting to not respond to my meds. Still takes an hour at least to get out of bed in the morning. I'm hoping that I can get enough energy tomorrow to tackle cleaning out my closet. I go back and see the sclero specialist in NYC in May. That can't come soon enough. I just didn't think that almost 30 would be so painful for me.


Hope everyone is having a better week! I'm trying to keep my spirits high. Gotta keep on pushin'!


~ Jo

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I'm so sorry you have to deal with this- I know this disease can have times where things actually get better. I'm hoping you see that soon. Warm hugs from the west coast where it is rain rain rain..........

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Hi Jo,


It's really hard to accept that some days the disease has you and some days you have the disease. I struggled with this and sometimes still do. Getting to the point of accepting that some symptoms will never go away and figuring out how to live with that isn't easy, but it is beneficial if you can. I too have a great deal of pain and what has kind of made a turning point for me was understanding the mechanics of what is causing my pain. Not knowing made me fearful of the pain itself and that fear actually exacerbates the pain. Talk about a vicious cycle~ :(


We have a lot of good information about Pain and Scleroderma, including some tips on managing it. Now what works for one person may not work for another, but there is almost always something that will help. You might consider asking for a referral to a pain specialist or pain clinic when you see your scleroderma specialist. They think outside the box when it comes to tackling intractable pain.


The other thing to consider is that your depression may also be a symptom of scleroderma. We have a link for that too - Depression and Scleroderma. We are our own worst enemies when it comes to regarding depression as a medical symptom and not a character flaw. Besides the feelings depression brings with it, depression can certainly worsen our perception of pain. It might be worth mentioning it to your doctor too.


I hope things get better soon for you! In the meantime, here are some spoons: :spoon: :spoon: :spoon: and all my best wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jo,


I'm very sorry to hear that you're feeling so rotten; it's horrible to wake up and wonder how you're ever going to get through the day. :emoticons-i-care:


I've found another link about relieving pain without taking more medication which I hope will give you some more ideas to make you feel a little better. I don't know if you like animals as I do but there is another very interesting link about Pet Therapy which I found rather fascinating and hope that you might as well. As Jeannie has said, what works or appeals to one person may not be any good for another, but I know my dogs have provided me with a lot of comfort whenever I've been worried or upset (as has my husband to be fair, but the dogs don't answer me back!! ;) :lol: ) Certainly I find another birthday rather depressing, but that's probably because I'm getting a lot closer to being 60 than I like to admit!! :rolleyes:


I really hope that you're soon feeling a little better and I've included another couple of :spoon: :spoon: to keep company with the ones Jeannie's given you and a :emoticon-hug: as well.

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Jo


None of us here thought that we'd be sclerodermians with all that entails so you're in good company!


Jeannie is right about accepting things, for me accepting that chronic pain is now part of my life has given me a realistic expectation about it, that it can be managed but not eradicated. With this in mind I had planned to get referred to a pain management clinic but thanks to a new general practitioner I don't need to. My new general practitioner has put me on to pain patches with other medications for breakthrough pain. Although the pain is still there it is being managed for the first time in four years and this has made a real difference, not just physically but mentally.


Some days are good, some bad which means by definition that if you're having a bad day a good one must be just around the corner! :great:


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jo!


As has been posted by those (on your thread) preceding me, you do not stand alone in this. Each of us has varying levels of pain, yet have been fortunate enough to find a great deal of relief (thanks in large part to this very forum) :emoticons-group-hug:!


Whether through caring "Sclero Family", who share their experiences, or from the great medical information provided here, it's difficult NOT to glean what we need, to become our own advocates, which proves very useful for all of our dr's appointments.


As you have found, knowledge is power and this is a great place to become empowered :emoticons-yes: !


Do let us know how your aapointment in May goes?

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hey Jo


I know times are difficult when you just feel that the days are running into one another and you think that the discomfort will never go away! :emoticon-crying-kleenex:


What the others have said and I totally agree with, is not to be so hard on yourself,if its a poor day,go with it,getting upset and frustrated will only lower your mood,if its a good day,believe me you will have them! tackle jobs you want to do,but,you MUST learn to pace yourself and not go all out to do everything in one day!.


Jo having scleroderma in my humble opinion makes a person think,what we used to do without a second thought is not there anymore, and for your peace of mind and well-being is to come to an acceptance,that this is it, this is our life now,and,no it's not always what we would wish it to be, it's how it is.


I've found a gentle peace since I have excepted things and do the best I can with what I have..it's a good place to be.


If you are struggling both emotionally and physically,please see your doctor and talk to him/her how you feel and see if anything can be given to ease you along ok,do not suffer in silence ok.


Keep posting how things are with you ok, we all have been/go to this place from time to time!! :emoticons-i-care:


Hugs and warmth :emoticons-group-hug:


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:emoticon-hug: :emoticon-hug: A couple of hugs for you! We all have times where we are down and out!! Believe me! Just keep plugging away the best you can. And it's okay if the dishes or the vacuum sit for a couple of days. I used to be such a clean freak! But now, I know it's not going to kill me to let the laundry go one day, or even ask hubby or kids to help out. I so hope you start feeling some better. If you can't get into your specialist right now, maybe your regular doctor could help give you something to help the pain until then. Or at least call the specialist and maybe they can call in a script for you. It's worth a try. I know my RA and Pulmonologist appointments are far too few and in between!!!


Again, HUGS!


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