Guest guest Posted June 24, 2012 Report Share Posted June 24, 2012 Dear ! That is quite a load you are carrying to be in med school while you're suffering with this miserable life condition. Good for you! When my doc has me fill in the body outline of 'where it hurts' I just color the whole thing in! When he asks, 'muscles or joints?'... I say, 'everything! muscles, joints, tendons, bones, skin and blood!' I think that about covers it, but I don't know if he really believes that. I know you do, though! This is a great group of very compassionate people, and will offer support and 'an ear' when you need to be heard. Consider yourself welcome. I am glad you found this site. If you've had SD for 11 years it's probably been a lonely road. I know mine has been. I'm just glad I finally found the kind, gracious people here. It's a blessing. Take care. *Holly * * * *Holly Dorst* *Compassionate Help with Difficult Issues* *1050 N 3rd St., Ste B2* *Laramie, WY 82072* ** * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2012 Report Share Posted June 24, 2012 Dear ! That is quite a load you are carrying to be in med school while you're suffering with this miserable life condition. Good for you! When my doc has me fill in the body outline of 'where it hurts' I just color the whole thing in! When he asks, 'muscles or joints?'... I say, 'everything! muscles, joints, tendons, bones, skin and blood!' I think that about covers it, but I don't know if he really believes that. I know you do, though! This is a great group of very compassionate people, and will offer support and 'an ear' when you need to be heard. Consider yourself welcome. I am glad you found this site. If you've had SD for 11 years it's probably been a lonely road. I know mine has been. I'm just glad I finally found the kind, gracious people here. It's a blessing. Take care. *Holly * * * *Holly Dorst* *Compassionate Help with Difficult Issues* *1050 N 3rd St., Ste B2* *Laramie, WY 82072* ** * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2012 Report Share Posted June 25, 2012 Hi , Thank you for your " hello " - that was nice, and especially from hot South Texas! Having said that, I would take a bet it is very, very hot there right now and so maybe we are at opposite ends of the spectrum. It must be pretty gruelling this time of year for you. Drizzle, drizzle and more drizzle here today...we call it " dreak. " I'm sorry you are into a flare. I completely understand the muscles hurting too, even to the touch. Sounds a bit crazy to others, even the docs, I know. How are you managing it? I wonder if you have put a " reduced timetable " in place to try and meet this one head on? That will be hard, of course, with your school commitments. Do your advisors know about your Stills and the other problems, and if so, are they empathetic? It sounds as though you might be taking summer classes at this time of year - or are you on a break just now? Being in your program is such a measure of your determination, . No matter how long it takes you (and I so hope your school has all the right support in place for you?) it will be such an achievement when you are through. What kind of medicine will you be going in to? I never know whether the " fog " is the fatigue and the ever-so-annoying cotton wool head, or whether it is the drugs. Those that I can take irregularly, I delay or take early enough before I have to actually use my brain. Frustrating is exactly the right word - although I get quite cross when people use it in such a blase way! " What, you think THAT's 'frustrating'? - Ha! I can't even read the National Enquirer right now! " Thank you so much again for your hello. It is true that the scenery here is quite stunning - wonderfully dramatic in parts and at times, especially when there are mountains and lochs involved. Actually, that's my next project - I am saving up for a new camera and want to get serious with using applications on the computer and perhaps produce a portfolio...we'll see how that works out. Do let us know how you are getting on, just when you can. Know we are thinking of you and thank you for sharing. Hugs Fran To: Stillsdisease From: angela6_21@... Date: Sun, 24 Jun 2012 22:41:14 +0000 Subject: Re:Hello Fran Thought I say hello from hot South Texas. My name is man, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2012 Report Share Posted June 25, 2012 Hi , Thank you for your " hello " - that was nice, and especially from hot South Texas! Having said that, I would take a bet it is very, very hot there right now and so maybe we are at opposite ends of the spectrum. It must be pretty gruelling this time of year for you. Drizzle, drizzle and more drizzle here today...we call it " dreak. " I'm sorry you are into a flare. I completely understand the muscles hurting too, even to the touch. Sounds a bit crazy to others, even the docs, I know. How are you managing it? I wonder if you have put a " reduced timetable " in place to try and meet this one head on? That will be hard, of course, with your school commitments. Do your advisors know about your Stills and the other problems, and if so, are they empathetic? It sounds as though you might be taking summer classes at this time of year - or are you on a break just now? Being in your program is such a measure of your determination, . No matter how long it takes you (and I so hope your school has all the right support in place for you?) it will be such an achievement when you are through. What kind of medicine will you be going in to? I never know whether the " fog " is the fatigue and the ever-so-annoying cotton wool head, or whether it is the drugs. Those that I can take irregularly, I delay or take early enough before I have to actually use my brain. Frustrating is exactly the right word - although I get quite cross when people use it in such a blase way! " What, you think THAT's 'frustrating'? - Ha! I can't even read the National Enquirer right now! " Thank you so much again for your hello. It is true that the scenery here is quite stunning - wonderfully dramatic in parts and at times, especially when there are mountains and lochs involved. Actually, that's my next project - I am saving up for a new camera and want to get serious with using applications on the computer and perhaps produce a portfolio...we'll see how that works out. Do let us know how you are getting on, just when you can. Know we are thinking of you and thank you for sharing. Hugs Fran To: Stillsdisease From: angela6_21@... Date: Sun, 24 Jun 2012 22:41:14 +0000 Subject: Re:Hello Fran Thought I say hello from hot South Texas. My name is man, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2012 Report Share Posted June 25, 2012 Oh Holly, You have such a way on the email! I just burst out laughing again with the idea of you colouring the whole page bright red....I remember trying desperately to get one rheumatologist to understand, so before the appointment, I drew on myself in pink highlighter everywhere it hurt....I was covered from head to toe in neon pink, and it didn't wash off for weeks! Made the point, I guess. I'm so glad that maybe being part of the group can ease the loneliness - for too. This can be such an isolating business, even when you are surrounded by people. Even? Sometimes, especially, right? Happy Monday, everyone. Fran > To: Stillsdisease > From: hollydorst@... > Date: Sun, 24 Jun 2012 17:38:09 -0600 > Subject: Re: Re:Hello Fran > > When my doc > has me fill in the body outline of 'where it hurts' I just color the whole > thing in! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2012 Report Share Posted July 6, 2012 Dear , I'm so sorry it has taken me a while to write you. Like Holly, my heart hurt when I read about how alone you feel, and I think you are really brave to talk about that here. Functioning every day just feels like an uphill fight, doesn't it? It took me a long time to realise that part of my problem with that was I was " fighting the fight, " if that makes sense? Punishing myself when I can't do things, either by forcing myself to do them - and suffering even more for it - or being angry / upset / depressed about them...feeling as though I had failed. OK: here's the grandmother and eggs story - d'all use that phrase??? " Teaching your Grandmother to suck eggs " ? One of the biggest things I have learned from this family is about pacing and planning. And, I don't get it right - I haven't got it right this past two weeks and landed myself in a big mess (hence the delay in replying....). There is a good section on this on the Stills Foundation website, and it does take practise and diligence. Oh so easy to throw the plan out of the window when you are having a " good " day, right? And then again, somedays you will have the grand plan, and have it all mapped out but it goes pear shaped. What am I trying to say here? A skeleton plan, whether that's by day or by week, whatever you can manage, is something that works for me - and remembering to give yourself a pat on the back is an important part of that. At the same time, it is only skeleton and if it doesn't work out, it doesn't work out and you have not failed. In fact, you have won by perhaps curtailing the plan, or ditching something from it altogether, because you have recognised it's too much and reigned yourself in. I wonder how other peoples' planning goes and works out? My big lesson the last two weeks - I still cannot cope with incorporating the unexpected. I think I can / thought I could, but I can't. Furthermore, I need to be firmer with others in saying " no, I can't do that. Thank you, that's a lovely idea, but no. " It's not letting them down, it's not letting yourself down. You are being kind to yourself. Which I suppose brings me on to other people and the sense of isolation. Ach, , I just don't know what to say. It must be so hard for friends and family who one minute see us being " ok " (I'm sure you have the cover up down as well as the rest of us), and the next minute in a complete mess. On the other side, I know I feel that one minute they are understanding and I am overwhelmed by their kindesses, the next, I feel so hurt by an apparent lack of understanding and I am screaming inside " why can't you see? Why do you make me spell this out to you every, single time? " What is your situation, ? Do you live alone, or with family? What's the set up? I wonder if it would be useful to hear from friends / family - their story? It would seem like a timely moment for that if there is anyone out there prepared to offer their perspective or experiences. Hugs to you all - and you are not alone, . I'm so sorry it took me a while to reply. Please do let us know how you are going. Fran x To: Stillsdisease From: angela6_21@... Date: Tue, 26 Jun 2012 02:34:34 +0000 Subject: Re:Hello Fran Honestly Fran I don't know how I function day in and day out. At times when I am surrounded by people I feel very much alone. No one around me understands what I feel or go through except this group of people. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2012 Report Share Posted July 9, 2012 Hi , and everyone else. I have only posted once. Mainly because I've been in out of the hospitals lately. I just got married a few weeks ago and landed back in the hospital the day before the fourth of July. I had fainted and right in front of my hubby and complained of migraines and had fevers and feeling fatigued all day. I woke up to finding four paramedics in my home and rushed to the E.R. Once there many tests were performed and once again they ran the usual tests along with the cultures to test for any bacterias for a UTI bladder inf etc..of course it came back for a bladder infection. As i've been fighting these for over a year and a half now. I'm at the point where my fatigue,constant lower back pain,joint pain,chills,spiking fevers,rashes,and chronic migraines have me wondering if this truly is ADULT STILLS DISEASE and not something else. I've been to every specialist out there. I've exhausted them all. I've now started on a waiting list with the MAYO CLINIC and was told it would be six months. So now I am pretty much a advocate for myself. I'm feeling all alone in this and don't know what to think. I'm always in pain. Depressed and losing hope. I use to love my job and looked forward to working and now I have hired a lawyer and looked into collecting disability. I never thought this would be my life. It's frustrating. I am looking to get a second a opinion from U.W. I feel the CIPRO they have put me back on will not have any affect on me. The methotrioxate has helped with the flare ups to some degree I must add. I free in some areas it has helped. Any suggestions or ideas would be greatly appreciated. Thank you so kindly...Take Care... ________________________________ To: Stills Disease <stillsdisease > Sent: Friday, July 6, 2012 3:00 AM Subject: RE: Re:Hello Fran  Dear , I'm so sorry it has taken me a while to write you. Like Holly, my heart hurt when I read about how alone you feel, and I think you are really brave to talk about that here. Functioning every day just feels like an uphill fight, doesn't it? It took me a long time to realise that part of my problem with that was I was " fighting the fight, " if that makes sense? Punishing myself when I can't do things, either by forcing myself to do them - and suffering even more for it - or being angry / upset / depressed about them...feeling as though I had failed. OK: here's the grandmother and eggs story - d'all use that phrase??? " Teaching your Grandmother to suck eggs " ? One of the biggest things I have learned from this family is about pacing and planning. And, I don't get it right - I haven't got it right this past two weeks and landed myself in a big mess (hence the delay in replying....). There is a good section on this on the Stills Foundation website, and it does take practise and diligence. Oh so easy to throw the plan out of the window when you are having a " good " day, right? And then again, somedays you will have the grand plan, and have it all mapped out but it goes pear shaped. What am I trying to say here? A skeleton plan, whether that's by day or by week, whatever you can manage, is something that works for me - and remembering to give yourself a pat on the back is an important part of that. At the same time, it is only skeleton and if it doesn't work out, it doesn't work out and you have not failed. In fact, you have won by perhaps curtailing the plan, or ditching something from it altogether, because you have recognised it's too much and reigned yourself in. I wonder how other peoples' planning goes and works out? My big lesson the last two weeks - I still cannot cope with incorporating the unexpected. I think I can / thought I could, but I can't. Furthermore, I need to be firmer with others in saying " no, I can't do that. Thank you, that's a lovely idea, but no. " It's not letting them down, it's not letting yourself down. You are being kind to yourself. Which I suppose brings me on to other people and the sense of isolation. Ach, , I just don't know what to say. It must be so hard for friends and family who one minute see us being " ok " (I'm sure you have the cover up down as well as the rest of us), and the next minute in a complete mess. On the other side, I know I feel that one minute they are understanding and I am overwhelmed by their kindesses, the next, I feel so hurt by an apparent lack of understanding and I am screaming inside " why can't you see? Why do you make me spell this out to you every, single time? " What is your situation, ? Do you live alone, or with family? What's the set up? I wonder if it would be useful to hear from friends / family - their story? It would seem like a timely moment for that if there is anyone out there prepared to offer their perspective or experiences. Hugs to you all - and you are not alone, . I'm so sorry it took me a while to reply. Please do let us know how you are going. Fran x To: Stillsdisease From: angela6_21@... Date: Tue, 26 Jun 2012 02:34:34 +0000 Subject: Re:Hello Fran Honestly Fran I don't know how I function day in and day out. At times when I am surrounded by people I feel very much alone. No one around me understands what I feel or go through except this group of people. .. Quote Link to comment Share on other sites More sharing options...
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