View Full Version : Thank Goodness for All of You

Dance in the Rain
06-18-2011, 12:31 PM
I am new here but have been lurking. I am not yet diagnosed and looking for my answer. I have started the ball rolling with going to a new rhuem that was referred to me by a friend, and I don't think I'll get the, " but you are a Mom of 3 children. How do you think you are supposed to feel?" response from this one.

My stuff (which will all be familiar with you): positive ana, reynaud's, fatigue, achiness (flu-like, of course), did I already say fatigue?, sore hands...so sore..and feet, muscle tightness ( I think you could play me like a harp!) and new this past year dizziness.

I thank goodness for all of you that have posted. You have made me feel reassured that I am not insane, provided me with a place to sit with a cup of coffee (when I get a chance) and read some supportive words and feel understood.

Thank you.

06-18-2011, 12:41 PM
First let me welcome you to WHL! The majority of us have wondered if we were crazy at one time or another so you are not alone! I am so glad that you finally decided to come out of lurker mode and join our family! Make yourself at home and I look forward to getting to know you!

06-18-2011, 01:05 PM
Hi Dance in the rain! I love your user name . Welcome to a family that will treat you with great dignity. Your words will be validated here, that I can assure you.

Gosh muscle spasms are my middle name as of late. All I can say is I feel your pain(smile). I have many of the symptoms you express and I can only hope that you will receive good care at this new rheumy.

When I was in my 30s, I was sick a lot with many lupus symptoms, but never connected the dots. I was so very tired raising my kids. Bless you as your load is heavy while being ill. You will find the strength you need to move forward from the wisdom and encouragement of this dear family.


Dance in the Rain
06-18-2011, 01:35 PM
Mari, thank you for your quick welcome reply. I am excited to have this forum as a resource and getting to know you as well!


06-18-2011, 01:39 PM
Hi Ditr,

Welcome, I am glad you have joined us.
We all get reassurance here, and proof that we are not crazy or lazy.
Even though I have had problems, when I was young, I was not dx until I was 50 years old and in pain for about 6 years.
I am 55 now and glad that I don't have to do the Lupus ( as bad as it is now) and raise my three children at the same time.
It must be very hard, to have all these symptoms and raise these children at the same time.
So grab that coffee and lets talk.lol


06-18-2011, 01:44 PM
Hello Dance in the rain,

Welcome to our lovely family of WHL and i do apologise i did'nt see your post you'd done.

So you do have Raynauds and your symptoms sound connected to Lupus and like Tammy said muscle spasms are so painful at times and waiting for them to relieve themselves is another matter. The fatigue is another big issue with the dieases and also foggyness which we all suffer from.

Well we're all here for one another and in the same boat but in different situation's at times refering the lupus and Autoimmune diseases....just come on and vent away or ask question's as there's always someone on 24/7 being such a wonderful worldwide site.

Terri xxx

Dance in the Rain
06-18-2011, 01:44 PM
Thanks for your words of welcome, and understanding. I have 3 children, ages 10, 8 and 18 months. I have been dealing with the life altering symptoms for 7 years (the roller coaster ride of fatigue and pain that makes me feel very, very old when it is here and then the symptoms lighten and you feel lik eyou must have imagined how badly you felt...) I was in my mid-30's then and sought help, but was told that I should be tired and that the positive ANA and raynaud's were just flukes. I went to 3 different drs. at that time and was brushed off completely. Now, just starting my 40's with new symptoms cropping up (dizziness & chest pain) and I just can't "fake" it anymore with my freinds & family. I am worn out emotionally and physically and am determined to see this through this time and not be daunted by skeptism.

Wow, that just plopped onto the page. I think I just vented. I have to run, my 18 month old is literally climbing on me and needs some attention.

06-18-2011, 04:15 PM
Bless your heart. Keep record and pictures everything. Gosh the pain in the chest is wicked. Keep strong and you can send me a personal message if you want.

Hey I think that wad a vent! Nice job! Lol
Keep strong D!

Dance in the Rain
06-18-2011, 04:24 PM
Thank you for the welcome! It's evening now and little one is in bed, the 2 older are playing and husband is at work. I think what I have is in the autoimmune family, whether or not it's lupus or stays in that grey area forever, I don't know.

One question though, I love my cup of coffee in the morning, but I have seen something about alcohol. Is wine bad? I love my shut down glass on wine in the evening, sitting on my front porch, I would hate to give that up too. :(


Dance in the Rain
06-18-2011, 04:27 PM
Hi! Thanks for welcoming me. I'm so glad I bit the bullet and logged on today. I feel like I have finally admitted to myself that something is wrong, & it's not in my head. I hate feeling weak, but I think i have realized that it's ok that i do not have the energy that I used to and wish I could have. It's like my mindset has altered.

It's a good thing, and thanks for being here.

Dance in the Rain
06-18-2011, 04:29 PM
Thanks Tammy!

BTW, i don't know why I feel so shy about putting my name up here, but I am..so here it goes,

Cheers, Danielle

06-18-2011, 04:39 PM
Thanks Tammy!

BTW, i don't know why I feel so shy about putting my name up here, but I am..so here it goes,

Cheers, Danielle

Please don't feel like you have to use your real name. Many on here use the alias due to family, work or simply to be safe. You became part of our family the day you joined. We don't care what you want us to call you!

06-18-2011, 04:46 PM
Thanks Tammy!

BTW, i don't know why I feel so shy about putting my name up here, but I am..so here it goes,

Cheers, DanielleHi Danielle,

It's lovely how you've revealed your name.lol and you should'nt worry about using your name because the admins are tight with security on the site...so NO worries there mate.


Dance in the Rain
06-18-2011, 05:11 PM
I am a total Yankee, even as far to say one from New England, so conservative to boot, and Terry, I am so lovin' the "mate" in your posts. It rocks.


06-18-2011, 05:17 PM

You'll have to excuse me mate (hear i go again) as i type how i speak plus i come from a place in the uk where the speech is broad, so i do intend to type how i speak, some words are held back but i do have Tammy in stitches...she's a new member but brill and such a good laugh.

I hope you really like the site mate as we're a smashing bunch and willing to help as best as possible as we're not qualified Doc's but we're the nearest to it concerning suffering and you should know that besides us, what it causes.

Hugzzzzzzzz Terry

Dance in the Rain
06-19-2011, 09:54 AM
It's always good to be true to yourself, whether it's in speech or heart or otherwise. The genuineness always shines through!


06-19-2011, 10:39 AM
Hi Danielle,

I'm a bit late getting to this thread, but I wanted to drop in and say welcome anyway. Looks like you've met most of our regulars here. A fine group of folks.

Welcome, and please make yourself at home.


ETA-I'm a fellow New Englander-I live in Maine.

Linda From Australia
06-19-2011, 01:34 PM
Hello Dances in the rain .... I don't think I have met you yet, perhaps we can chat on the chat feature some time to get to know each other.

06-19-2011, 01:42 PM
It's always good to be true to yourself, whether it's in speech or heart or otherwise. The genuineness always shines through!

DHi Danielle,

It's no airs or graces where i'm concerned mate, what people see is what that get.

I'm always stone cold and my hands are and if anyone as touched me in the past it's been the phrase "cold hands warm heart". xxx

Dance in the Rain
06-19-2011, 05:43 PM
I am with you! I totally see your trueness. :) (Not a word I am sure, but I love to make my own up!)

Hi Rob & Lida! I have seen some of your posts as I have been going through some of the old threads. I am at an advantage, I feel like we've "talked" already!

Nice to meet you.


06-19-2011, 05:47 PM
Hi Danielle,

Your up late mate and how you been feeling today??...it wow be long before i hit the wooden hills just popped me valium mate.

I've become quite an expert at being a druggie.lol

Hugs Terry xxx

Dance in the Rain
06-19-2011, 07:50 PM
This is going to be a typo fest..my hands are so tired. I'll edit later, I hate making typos..comes from being trained as an elementary teacher I guess.

Thanks for checking in on me, you are a love (hey did I do that right? I tried using some of your lingo since ours is so boring!). I am waiting for my dear husband to come home, he works shifts and it varies. Today is Father's Day, and I can't go to bed, although the children are asleep, and let my beautiful man come home to an empty quiet house after 12 hours of work.

Plus I am hours behind (?) you I think. I am in New England, kind of close to Boston, Massachusetts. (at least relatively speaking!)

I feel like I have come out of the closet these past few weeks. I have tried for years (about 7 or so) to hide when I don't feel well, from my family and my freinds. I have just hit my wall. And, I joined this site too. I feel relieved. And terrified. I finally have let go and told people I fely like poop most of the time.

I just don't want to have to fight for proper care, I tried before when my 75 year old mother in law could do more than me, and I was 40 years her junior. I used to bike and hike and move, and since my 2nd child, all the gears just ground to a halt and everything changed. And, no one believed. I felt (feel) like a hypochondriac. I never was before.

But I am done. I have no fight left, just a need to be taken care of, to take care of myself when I can't take it anymore. that means I can't cook or keep house the way I want. I stop grocery shopping once i hit all teh things we need.

But..I have enough left to roll my 18 month old around so he laughs like a magical squeaky toy. The sound that makes life worth breathing.

I am going now, I am all over the place and I hear my husband approaching the stairs. I need that hug before I go sleep.

Thanks for listening. And I apologize. I have 7 years of roller coaster feelings that I have kept to myself, and they just keep pouring out.

Cheers, and niters,

06-19-2011, 10:31 PM
Bless you Danielle as you try to take care of an 18 month old. I get so tired and sore when I babysit for a few hours! I'm so glad you joined us.

06-20-2011, 01:44 AM
there are times when we get so drawn, we dont know how we will be able to complete our day.
fornunatelly, there can also be days where we feel much more normal.

i am sorry you have such a hard time at the moment.

remember the joy of your little one.

06-20-2011, 03:16 AM
Hi Danielle,

I hope you got your hug mate to help you feel better and it's lovely how you have some energy for your 18mth old child, when our grandaughter comes for an hour off my hubby's side as i have no kids and i reckon that's down to the Lupus...well i'll carry on after an hour my heads mashed in mate and pounding and she's golden for 3yrs but it's nan this the nan that lark and not having much energy christ it does me head in.

I ah sure about the times between we all but i just say morning and goodnight when both are due this end.lol

Danielle i've had years of ailments and they started lightly at 14 and bang at 18 seizure's broke out, strokes, spondalitis i was born with etc the list dow end and i'm now 42 and 4yrs back when we moved here i still seemed ok but come the december my hands went into a right mess and my skin saw a dermo you have Raynauds, then i was sent to a Rheumo and no end of bloods was done and i have what's in my signature and with my past he told me i was born with it but when it first started 3yrs back my leg was in severe pain and my hip and my hubby kept sayingit's ciatica it wore it was this lot and it's progressed terrible within the last couple of years.

My hubby found WHL while i was sleeping and you did the best joining it besides myself...as they're smashing people and besides that if your down and feel you can't talk to loved ones, my next family are yourself and all the other member's and i have released such alot since joining but it's done me good and you feel the same in a short time.

You done the best by coming out and chatting with we all because your NOT alone concerning this disease.

All my love Terry xxx