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View Full Version : Hello, I'm Unspecified. How can I baffle you today? ;)



sharpiessave
05-19-2011, 03:09 PM
Ladies and Gentlemen, I'm thrilled to finally be here!

I'm lucky, I think, that it's only taken me a little over a year to get here. It started with a family doctor who was convinced (and almost had me convinced too) that it was all in my head. Then we went through rounds of radiology. Sketchy MRI results sent me to a hematologist/oncologist where much blood was drawn, and a creepy bone marrow biopsy was performed. If you haven't had one, it feels like turning the bass in your car up so loud you can feel it in your spine. NOT CANCER!! Woo-hoo!! I inadvertantly (maybe ;)) challenged the hematologist into figuring me out. "Um. . .if you can't find it, who can I go to who will?" I meakly asked. "Oh, I'll find it!" he declared.

It has culminated in an iffy diagnose from the sweetest Rheumy ever, that I'm clinging to hardcore: an unspecified connective tissue disorder with secondary Sjogrens. I've kept a medical journal since January, and that's helped a lot. I have tons of joint pain, snap crackle popping, and fatigue. I get all mopey for a few days, then the hand bumps appear, then the popping gets downright stupid, then I'm down for the count. I've been in a dumb flare for the last three months or so without relief. Nine days ago I started Prednisone and Plaquenil. Hot to trot doesn't mean what it used to. :)

There are definitely days when I feel super sorry for myself. I used to be so hardcore! I'm scared to death that I'll never get to be who I was like, 3 years ago. But I have hopefull spurts too. I think that when all my meds start to work maybe I'll be an even more awesome version of me.

I've been sneaking around on this site for the last few months, and it's been a life-changer. I'm so thankfull to all of you for posting. These personal accounts have been vindicating in a way that no bloodwork ever could be. When I read anything on here that I'm going through too I feel less alone, which is spectacular. And that's what the internet is for, right?

So thanks guys. Thanks for being here, and thanks for making here a place for me to be too.

tgal
05-19-2011, 03:33 PM
Yay Sharpie! Glad you finally made unspecified! It is a step in the right direction LOL

Seriously, I do want to welcome you to WHL! Many of us can understand exactly where you are right now. Some go months or years without a diagnosis. Most of us have, at one point on our journey, almost bought into the fact that it was in our head. I am really glad that you persevered and stood up for yourself! That is what it takes

I am also glad that you found us. This is a wonderful group of people who are supportive and knowledgeable. I don't know what I would have done had I not found it. So make yourself at home. Browse through the old threads or start new ones! Welcome to the WHL family! I look forward to getting to know you!

rob
05-19-2011, 03:40 PM
Hello Sharpiessave,

Welcome to WHL! Thank you for the positive input. We strive to make this site as helpful as possible, especially for the newly diagnosed as well as those who are still struggling with no diagnosis.

It sounds like you've got a good handle on things, and it's great that your Dr./Rheumo has started you on some proper meds. For many people, the hardest part of autoimmune disorders is the part that leads up to the point you are at right now. Often times, once you are diagnosed, on meds, and begin to cope emotionally, things calm down and start to become easier.

And you bring up a great point. The "new you" post diagnosis could easily become more awesome than the old you. I hate my autoimmune disorders, but I would not trade the positive changes they have caused in my life and for my attitude and outlook for anything.

Once again, welcome, and make yourself at home,

Rob

sharpiessave
05-19-2011, 04:27 PM
Wow you guys, that was wicked fast! Thank you so much for welcoming me. I feel like I just came in from a blizzard to find a warm fire waiting. This is gunna be great!

Sharpie

magistramarla
05-19-2011, 09:52 PM
Hi Sharpie,
Welcome to WHL. You sound much like me - mine is called Mixed Connective Tissue Disease - Lupus, Sjogren's, RA, and Psoriatic Arthritis, with a bit of Meniere's Syndrome and Spasmodic Dysphonia thrown in.
Have you checked out the Sjogren's Foundation site? http://www.sjogrens.org/ It can be very helpful, too. I attended a Sjogren's Conference, and it was life-changing. It was so great to see 300 other people like me and to listen to docs who really understood.
Glad to have you with us, and I'm glad that we have been helpful to you.
Hugs,
Marla

steve.b
05-20-2011, 05:01 AM
i would like to say welcome, but as you have been snooping around for months hello thanks for saying hi.
we have lots of nameless visitors, it is good to hear that some, "quite a few" stay.

keep reading, and ask us questions, most times we can help. but we are not doctors.............we know more than most of them anyway.

debbie-b
05-20-2011, 05:17 AM
Hi Sharpie,

You are right, it is going to be great, for us and you. I like the way you write, it's funny but to the point.
This site is very helpful to all of us, somebody is always here to answer questions or listen to a rant, which we do quite often. It does help when you have people, who really understand what we are going through.
I, myself thought sometimes, it is impossible to have all these symptoms and pains all over my body, but now I know, that most lupies go through the same things, I am going through. It is reassuring to know, that I am not the only one.
Welcome to WHL, glad to have you.

Debbie

Peridot20_Gem
05-20-2011, 06:47 AM
Hello Sharpie or shall i say snoopy.lol

It's lovely to have you with us at WHL finally but like you said that's what the internet is for but my hubby found the site while i was asleep and it's been the best i've ever done, we're all caring member's and wheather it's crying or venting get on here mate because there's always someone on line.
I've got Sjogren's like yourself and A1 Diseases overlapping Autoimmune Diseases and like yourself some days it's like living in hell with the pain, spasms, swollen joints etc besides skin problems. Try not to get to stressed or depressed even though it's hard because it does make the symptoms worse, i'm telling other's constant and here's me a manic depression now that's a laugh if you want one.

I really do hope the meds help you in a good many ways but while your in pain pace yourself out on doing things which i've learnt to and those better days, get stuck in with what needs doing.

It will be great getting to know you.

Terri xxx

Gizmo
05-20-2011, 09:20 AM
I'll definitely be looking for your posts - you have a great outlook and wicked sense of humor!

Peridot20_Gem
05-22-2011, 06:28 AM
Hello Sharpie,

How you feeling in yourself now, since joining the site as i hope the medication is helping in one way or another. xxx

sharpiessave
05-22-2011, 05:43 PM
I've started writing this three times now and had to delete everything and start over. I still can't figure out how to put into computer words what's been going on in my head these last few days. I'm gunna try though. Come on, self. . .type:

The acceptance I feel here is kinda daunting. I feel sort of like I've walked blindly into a secret society and been immediately presented with a robe. Wait; I don't mean that to sound creepy. What about this? Remember in kindergarden, when all you had to do was sit down beside someone and just like that you were best friends? It's kinda like that, and my now-adult self hasn't experienced that in so long it's sort of overwhelming. But in a great way.

The last few days have been rough, physically. I'm hurting and whatnot. But inside my head I'm feeling awesome. I'm thrilled to now be in touch with people who know exactly what I mean by "rough." And I feel ridiculously lucky to have stumbled upon this particular group of people who can simultaneously cry and laugh together. And the advice--no, wisdom! Before things started going topsy-turvy in my body I didn't know thing one about autoimmune disorders. While I have a fantastic Rheumatologist, reading what gets posted here makes so much more sense than what I hear in his office.

I want to jump right in and reply to everything I read, but I'm still shy yet, being a new kid. Once I get my courage up you'll be reading a lot from me, I promise.

tgal
05-22-2011, 06:25 PM
I've started writing this three times now and had to delete everything and start over. I still can't figure out how to put into computer words what's been going on in my head these last few days. I'm gunna try though. Come on, self. . .type:

The acceptance I feel here is kinda daunting. I feel sort of like I've walked blindly into a secret society and been immediately presented with a robe. Wait; I don't mean that to sound creepy. What about this? Remember in kindergarden, when all you had to do was sit down beside someone and just like that you were best friends? It's kinda like that, and my now-adult self hasn't experienced that in so long it's sort of overwhelming. But in a great way.

The last few days have been rough, physically. I'm hurting and whatnot. But inside my head I'm feeling awesome. I'm thrilled to now be in touch with people who know exactly what I mean by "rough." And I feel ridiculously lucky to have stumbled upon this particular group of people who can simultaneously cry and laugh together. And the advice--no, wisdom! Before things started going topsy-turvy in my body I didn't know thing one about autoimmune disorders. While I have a fantastic Rheumatologist, reading what gets posted here makes so much more sense than what I hear in his office.

I want to jump right in and reply to everything I read, but I'm still shy yet, being a new kid. Once I get my courage up you'll be reading a lot from me, I promise.

You brought tears to my eyes with this post because it is exactly how I felt when I stepped in here and it is the exact reason that Conrad and Susie started WHL. We are a family and you became a member of it the moment you walked in. This disease is so strange. If we told someone that we had cancer they would immidiately understand our illnees but when we say that we have Lupus or another autoimmune disease they look at us and think that we need to be stronger, work harder, push ourselves more because we don't LOOK sick enough to be really sick. When we stumble accross this little piece of the net there is a moment where our heart stops because FINALLY someone doesn't think I am crazy or lazy! It is like we are finally "home".

As for you being the new kid.. that is way beyond over. It is now your turn to help others feel what you felt when you came in. Jump in the discussions and listen, talk, learn or just open your arms and your heart to the next person that is feeling as lost as you were. It may not be the circle of life but it is the circle of WHL.

We are glad you are here!

steve.b
05-23-2011, 12:51 AM
the reason i came.... i needed support
the reason i stay ..... i am support.

this group brings out the best in me.............................
and i love it.

this is a caring sharing family.
why cant the rest of the world catch on.

Peridot20_Gem
05-23-2011, 05:12 AM
Hello Sharpie,

You've about said it all mate down to one straight point, of exactley how i felt joining the forum welcomed straight away off Rob, tgal and marla such terrific people you'd want to know besides other member's.

Besides my hubby listening to me 24/7 i know i belong to a lovely large family worldwide all in the same boat as myself, yet so willing and caring to listen.

Come out from behind the curtain and get stuck in with the threads besides adding them, as we're all here for you and your point's of view towards life and what your going through are so down to earth that's what the member's love.

magistramarla
05-26-2011, 09:37 PM
You brought tears to my eyes with this post because it is exactly how I felt when I stepped in here and it is the exact reason that Conrad and Susie started WHL. We are a family and you became a member of it the moment you walked in. This disease is so strange. If we told someone that we had cancer they would immidiately understand our illnees but when we say that we have Lupus or another autoimmune disease they look at us and think that we need to be stronger, work harder, push ourselves more because we don't LOOK sick enough to be really sick. When we stumble accross this little piece of the net there is a moment where our heart stops because FINALLY someone doesn't think I am crazy or lazy! It is like we are finally "home".

As for you being the new kid.. that is way beyond over. It is now your turn to help others feel what you felt when you came in. Jump in the discussions and listen, talk, learn or just open your arms and your heart to the next person that is feeling as lost as you were. It may not be the circle of life but it is the circle of WHL.

We are glad you are here!

Mari,
I loved what you said here, especially the "circle of WHL". It says exactly what I feel.
Hugs,
Marla

magistramarla
05-26-2011, 09:39 PM
the reason i came.... i needed support
the reason i stay ..... i am support.

this group brings out the best in me.............................
and i love it.

this is a caring sharing family.
why cant the rest of the world catch on.

Beautiful sentiments, Steve!
Hugs,
Marla

magistramarla
05-26-2011, 09:41 PM
Hey Sharpie,
You're part of the family now, so come on in and play!
Hugs,
Marla

Peridot20_Gem
05-27-2011, 11:33 AM
Hello Sharpie,

We're all hoping your ok? and please let us know how you are and taking part in our threads not only helps other's but yourself making more contact with our member's.

sharpiessave
05-27-2011, 08:36 PM
Thanks for all the awesome, everybody. Sorry I haven't kept up very well. It's been a stupid week, me-wise, and I've been pretty out of it. This might be a typical newbie question, but what's the best way to stay in touch? I feel like I lack the experience to respond to other people's threads yet. Having said that, I'm now going to scour some recent ones and see if there's anything I can add. But how does it work best? Does everyone have their own blog, where people can check up on them? I'm still trying to navigate my way around the site.

steve.b
05-28-2011, 01:13 AM
i find it easiest using the new posts flag.
it is at the top left hand side.
it shows all of the new comments, since you last logged on.
i usually log on daily, sometimes more often, so it is easy with this option.

Linda From Australia
05-28-2011, 03:19 AM
If you feel like commenting, do so. IF you don't feel like commenting - DON'T.

Sometimes you don't know what to say, so just say "I don't know what to say, but I just want to let you know that I am thinking of you"

You can be a friend, and just hold someone's hand. You don't really have to say much. Other times you might have a lot to say. NEVER apologise if you post a really really really long post. If people can't be bothered reading it, they won't. But I want to assure you that there are a small group of people who read EVERY POST, even if there are no replies, someone always reads the posts.

Peridot20_Gem
05-28-2011, 03:51 AM
Hello Sharpie,

If you do find it hard replying with the threads, then there's always a blog to do and how you feel and people will answer you but linda as about said it all, if it's a long one the member's who do have the time to read it will reply.

Have a lovely weekend, well the best you can.

((Hugs Terri)) xxxxx

tgal
05-28-2011, 07:52 AM
While there is the blog feature here, very few people even go look at it. Feel free to use it but if you don't get replies know that no one is ignoring you it just wasn't seen.
If you want to start a thread do so. If you want to comment, do so. If you want to simply read. Do so. There is no pressure. Lauri's Lounge is the place for any topic, Lupus or not. So if you want to post about something completely different go for it!


A good way to know what threads have been commented on since you were here last is to click the "What's New" button at the top of the page. It allows you to see just the threads that were posted on since your last visit. I didn't know that forever and I would scroll through trying to find new one!

Just be yourself. Do what you feel like doing. There is no stress here

Peridot20_Gem
06-09-2011, 12:46 AM
Hello Sharpie,

If possible can you just let we know on your thread how your feeling please, as it's nice to hear how new member's are feeling and doing??

Love Terri xxx

lovedbyHim
06-09-2011, 02:38 AM
Hi Sharpie I'm new and old! Lol this whole forum thing is a bit hard at first, but it will come natural to encourage, because of your own pain. Bless you in your efforts.

Dance in the Rain
06-18-2011, 12:35 PM
Hand bumps...does everyone get hand bumps. I got mine biopsied and was told they are chilbains. Is this part of it?

lovedbyHim
06-18-2011, 01:13 PM
Hello again Dance with rain, I do have hand bumps. They are pail in color and not very noticeable. I have them on my Ankles and tops of my feet too.

If you start a new thread in the new to forum part. I am sure many will see it easier and reply quicker. Omgosh I never thought others had this! You see you already contributed to validating my symptoms ! Thanks!

Peridot20_Gem
06-18-2011, 01:29 PM
Hello Dance with rain,

Yes i get hand bumps to do with chilblains, which also comes with Raynauds. I have them on my hands, feet, toes underneath and nose and it's so painful all down to coldness and blood vessels shutting down but i never had a biopsy, as i my dermo did bloods and took one look at me and new straight away.

Like Tammy said do a post introducing yourself so all member's can reply.

Here's a link below explaining chilblains and how bad they can get, have they said you also have Raynauds?

www.medic8.com/healthguide/articles/chilblains.html

((Hugs Terri)) xxx