A Day In The Life Of A Lupie

[Adminஐﻬ]

  I love this site, so many bright and compassionate people here!

I certainly appreciate everyone's input, concerns and points. I understand PML's alarm at the seemingly high rate of connective tissue disease in her immediate area. Point well taken.

Most of the research done on CTD's suggests enviromental, bacterial, virial as well as genetic predisposition, all playing a role in the CTD process.

But you bring up an interesting piont with regard to the issue of rarity, that I must address.

Here are some statistics:
1/3 of the human race infected with Tuberculosis
50 million Americans with Asthma
2.1 million Americans with Rheumatoid Arthritis
1-4 million Americans with Sjogren's Syndrome
1.5 million Americans with SLE/LUPUS
1 million plus Americans with HIV
500,000 Americans with Crohn's disease
212,929 Americans diagnosed with Breast cancer (2006)
42 per 10,000 Americans with MCTD

50 million Americans, 20% of the population, or 1 and 5, suffer from one of the 80 autoimmune diseases. Mostly effecting women.

Who has the 'rare" disease mentioned in this group?

Here's a link to reinforce my point regarding the hype that the mainstream produces to create the illusion of who's sicker than who. Don't be taken by the mass media feeding frenzy of playing on societies paranoia and ignorance:

" The Squeaky Wheel Gets the Grease"
(Research funding is not allocated to those who need it most)
by: Vicki Brower
www.pubmedcentral.nih.gov./articlerender.fcgi?artid=1371042

Connective tissue disease's are not all that rare. Wishing you all pain free days.
Gentle Hugs, Kim

 Staggering numbers Kimmy

[Peppermint Mocha Latte]

Great Stats... Thanks!!!

PML

[3sisters]

   Quick update on the vocational school  journey. I was approved for a scholarship on monday, the 11th. The hours will be less than what i first anticipated. (18 a week instead of 24, and that little of reduction in hours bit makes such a big difference for me mothering my 7 yr old) I just enrolled today and took an entrance exam. Did good on exam.    I'm excited about moving forward with this. I'm so done running the
 cleaning business.     I'm ready to settle into  the mainstream   
and get a good job that will offer me and my daughter a better life
  (ie. benefits)

I'm still fair to mid-lin with health: been having episodes of tachycardia at rest  strange sensations in my arms, kind of like they'rre falling asleep or stightly numb and a bit achy,GERD crap, still have hacky dry cough.     Oh, very crabby and moody.....
Pressure/pain  in chest, fatigue, arthritis, fevers, ulcers in my nose all summer long, and weakness.     I have been falling asleep sitting!  sigh....... > and I've been wicked transposing letters in my words these last few days......... I have the thoughts in my head, and then draw complete blanks,  and then transpose letters while typing. I put the liquid dish soap in the cabinet and "microwaved " a plate of food in the fridge     and put  a dirty dish back into the cupboard.    
All I got to say is thank God I have the food in the freezer as I didn't have to cook anything from scratch.  My vacuum cleaner has been sitting in the diningroom for hmmm, three weeks now!

The heat has been off the hook here in California, and now the Delta breezes are flaring my Raynauds!!!!  I was wearing two layers of clothes today, and my gloves this morning!!!      No wonder why other
drivers stare at me.
And !   Gail showed her son a pix of me and he said I was a  really white Indian!!!       (I'm mixed blood Mohawk Indian)

My daughter has some type of a bug thing going on, sore throat, ear ache,         fever and I'm taking her to Urgent Care  Pedi clinic tomorrow. You know how when the little one's get sick, they whine and cry at the drop of a hat? (Hey! That sounds like me!)    She asked me, "Will they give me a needle tomorrow????"  Tears     pouring down her face. I explained that they won't give her any shots tomorrow, just look at her ears and throat.  If it's bacterial, they'll RX antibiotics for her, and she'll start feeling like normal within a few days.
Yet, inspite of these frustrating pains  and fatigue, I still have many blessings in my life. Even when I don't feel a "grateful" I still am blessed.
whew, that's my day today.
Wishing each of you quality days and nights.....

[sunnipearl]

Wow Kimmy you have it bad don't you? I am sorry for you are so ill......I will pray for you and your daughter to get better.....She is so cute..... I don't know how you will pull this all off with the new schooling and all but God Bless your heart!
Cheers Kimmy......I am very happy that you will get a better job and praying for your return to wellness again...
 , I can relate to the words thing, And the plate in the  cupboard.and the fridge thing..I am that way all the time.....
One time my hubby found the Peanut Butter in the fridge and the jelly in the cupboard.....He knew it was me. He says oh is this something new Gail? .....Yeah Bob it taste better.......Just like a rock!
I am also sick still. My asthma is really bad tonight and my breathing is awful...I think I still have that bronchiolar thing going on...Fever low grade,and just feeling BLAAAAAAAAAA
I am weak also and my arms feel like they can only hang down to my sides.....I did get some house work done and I did go to the stores yesterday,Bought some things to clean with and a couple of Birthday gifts for my brother and sister,As it was their Birthday a week ago......
But I didn't really do much but some laundry and change the sheets on my bed...Which is the biggest bed I have ever changed.....Cali King..HUGE I look like a pimple in it..As my son says......

Kimmy I also have the gerd and all of everything a lupie can get it seem's like...Oh well
Don't want to even talk about my back......I sound like a 
OK, well I am going for now don't want to leave someone else out..I took up the whole dam page....Sorry,May God Bless you all,   Love,Gail 

[Adminஐﻬ]

  Quick update on the vocational school  journey. I was approved for a scholarship on monday, the 11th. The hours will be less than what i first anticipated. (18 a week instead of 24, and that little of reduction in hours bit makes such a big difference for me mothering my 7 yr old) I just enrolled today and took an entrance exam. Did good on exam.    I'm excited about moving forward with this. I'm so done running the
 cleaning business.     I'm ready to settle into  the mainstream  
and get a good job that will offer me and my daughter a better life
  (ie. benefits)

I'm still fair to mid-lin with health: been having episodes of tachycardia at rest  strange sensations in my arms, kind of like they'rre falling asleep or stightly numb and a bit achy,GERD crap, still have hacky dry cough.     Oh, very crabby and moody.....
Pressure/pain  in chest, fatigue, arthritis, fevers, ulcers in my nose all summer long, and weakness.     I have been falling asleep sitting!  sigh....... > and I've been wicked transposing letters in my words these last few days......... I have the thoughts in my head, and then draw complete blanks,  and then transpose letters while typing. I put the liquid dish soap in the cabinet and "microwaved " a plate of food in the fridge     and put  a dirty dish back into the cupboard.    
All I got to say is thank God I have the food in the freezer as I didn't have to cook anything from scratch.  My vacuum cleaner has been sitting in the diningroom for hmmm, three weeks now!

The heat has been off the hook here in California, and now the Delta breezes are flaring my Raynauds!!!!  I was wearing two layers of clothes today, and my gloves this morning!!!      No wonder why other
drivers stare at me.
And !   Gail showed her son a pix of me and he said I was a  really white Indian!!!       (I'm mixed blood Mohawk Indian)

My daughter has some type of a bug thing going on, sore throat, ear ache,         fever and I'm taking her to Urgent Care  Pedi clinic tomorrow. You know how when the little one's get sick, they whine and cry at the drop of a hat? (Hey! That sounds like me!)   She asked me, "Will they give me a needle tomorrow????"  Tears     pouring down her face. I explained that they won't give her any shots tomorrow, just look at her ears and throat.  If it's bacterial, they'll RX antibiotics for her, and she'll start feeling like normal within a few days.
Yet, inspite of these frustrating pains  and fatigue, I still have many blessings in my life. Even when I don't feel a "grateful" I still am blessed.
whew, that's my day today.
Wishing each of you quality days and nights.....

Kimmy~CONGRATS on your scholarship! 

I hope your little one gets back to feeling better ASAP.

I hear you on putting things in the wrong places. Stuff I should of put in the fridge I have put in the microwave or freezer My microwave sits on top of the fridge, 3 doors to choose from of course I get confused which door to put things in!!!

I have thrown things away into the trash can that should of been put away in the lower cabinet    Before I quit driving, I would have these "spells" where I would get lost in my own neighborhood and I couldn't find my way home, even though everything looked normal to me. 

I'm glad things are going good for you in vocational school, glad you recieved the scholorship.. now if we could make your health just better (((KIMMY)))

[Peppermint Mocha Latte]

Yay Kimmy!!!  We all have bouts of.... oh I forgot...    My favorite is when I say to myself you need these three things at the store... and when I get to the store that it literally 2 minutes away.. I have no idea why I am there.  Gail... I put my peanut butter in the fridge... only because its natural.     Anyway,  I have been on the go all this week and I am so freakin tired!!!  I think every one thinks that since I'm not working I am at everyones beckon call!!! OI!!!!  I also have been busy preparing for our garage sale and I am so not ready... I was making signs today and my hand is swollen!!! Fun Times.  Hopefully we do well with the "Lemonade for Lupus" sale and our garage sale... we are very excited here...

PML

[sunnipearl]

PML, That is so cool that you are doing that for the Lupus board....You are a sweetie! Hugs to your daughter...and you, 
Kathy, I can understand about the driving thing..I only go when I have to..
My son was almost in tears the other day when I was driving, I looked over at him and his face, OMG if you could of seen his face..... I was like whats the matter? He said,  *MOM* what is wrong with you? I am like, what do you mean? He Said, * MOM*! You stop at the green lights and everyone isHonking their horns at you, And you are saying to me, What is wrong with thoses people who are the tooting at? And then he Said , Your going through the RED LIGHTS OMG! I am going to DIE he said!  I couldn't believe that I was doing that. I also have to carry a piece of paper in my purse, that has my name and address on it and my doctors name, and Phone numbers to B/C I have had a hard time myself finding my way home from the doctors office....I was crying it was awful I had no idea who I was or where I was....For like 15 minutes...Now that scared me..When those things started to happen to me that when my hubby bought me a cell phone...But oh well all in a day of a lupie........Take care all of you and God Bless your hearts and soul,Love Gail

[3sisters]

   Thanks Kathy, Gail and PML~

I thank you for the words of encouragements and kuddos for the scholarship!!!  I am excited about the school thing. My doctors are  also happy that I'm changing my day job     .

My daughter has an ear infection. Poor little pumpkin girl    she was whining  and on the verge of tears a lot these last few days (like I said, kind of like how I am     without PMS!)

You all had me roaring about the memory thing.  It is frustrating    and scary,  embarrasing         too!   Kathy,    the three door thing would throw me off too!!! And, I have forgot where I live, and where I was driving too, and boy that freaked me out    . 

I start school on Monday.  I'm gonna rest up really good this weekend with my daughter. Make comfort foods and watch movies.
Kathy, is the Delta breeze (cold!) making your arthrits tweek more? Are you wearing your gloves outside yet?   

Wishing each of you pain free quality days and nights. Thanks for your friendships and encouragement!    Love, Kimmy

[sunnipearl]

  ((((KIM)))))
                                                      Just make yourself well okay and do just that watch movies and eat well.....I am so happy for you on everything you have accomplished so far..I am proud of you......Don't over do it okay?
Wasen't that funny on everyone's memory's........I am becides myself when I do that  stuff. If I am doing that with my son in the car,What the hell am I doing by myself?  OMG! anyway you get well Love you,Gail

[3sisters]

Thanks Gail!

I appreciate your support and kindness!!!!!  Thanks for being a great cheerleader and Big Sister~ I promise I willpace myself and not over do it! OK?!  I'll keep you all posted!!!   Love, Kimmy

[Adminஐﻬ]

A Day In The Life Of A Lupie

This thread is for anyone with Lupus or a Mixed Connective Tissue Disorder (MCTD) who would like to use this like a journal in a sense.

We can write how it feels to wake up in the morning, how it's like for us to get dressed, prepare breakfast, count our pills we take daily, and how we feel the rest of the day, or perhaps what we did that day and how good or bad it felt.
*The stories for those who are sick and work outside of the home would greatly benefit the readers .

This is not to scare off anyone who maybe reading this and facing a possible diagnoses of Lupus or a MCTD, but to read through our words how our daily life is for us and how we tackle the challenges we are thrown.

I can almost promise you stories we will write willbe read in a different way, on how strong we are and how we over come so many obstacles in our life being sick.

Bumping up a great thread I noticed that gets read a lot, but no one has posted in about a year to this.
Feel free to write your experiance.
~K
 

[Adminஐﻬ]

bumping up some threads to night that are good and are often over looked

[sdauwer]

I am 30, 31 tomorrow actually! I suffer from fibromyalgia, fibrocystic breast disease, thyroid disease, heart arrythmia, migraines, tremors, chronic pelvic pain and chronic hemmoragic ovarian cysts among other things.

I am married, I have 3 beautiful daughters. I had 2 c-sections and had a hysterectomy in Jan 2006 that removed my cervix and uterus. Later I had a few laproscopics to remove scar tissue, a mass and my left ovary so I only have one ovary left.

I am on a slew of medications.....

For a few years now I have tested positive ANA but the doctors wanted to wait on completly diagnosing Lupus due to the fact that I had alot of the criteria but not all of it. Lately my illnesses have been progressing and I just had an MRI that showed a lesion on my lumbar. Inflammation on my spine. They at first thought MS for sure until they saw the area the lesion is located so it looks more like CNS Lupus.

I went tonight for another MRI of the brain and cervical spine to rule out anymore lesions there. That would be more likely to be MS or even could be both. I am just so frustrated right now because I dont feel good and everytime I turn around there is something new going on.

My questions to you all if you dont mind me asking is what type of Lupus are you suffering from? How did you feel and react to your diagnosis? What was the process for you while you were being diagnosed? My mind is in a million different directions. I am trying to stay so strong, I know the only thing that will keep me healthy is my strength. I feel like a 30 year old girl trapped in a 90 year old body!!!

[mflepoma]

I can certainly relate to a busy day causes the next day to be pain and achyness. And I'm suffering from headaches like migraines waking me up at night, go to bed fine and Imitrex relieves it but leaves me feeling pain all over its happening daily maybe 2 days a week it won't happen. Is anybody else having this. Oh I have Lupus sjogrens fibromyalgia and slight raynauds.

[mflepoma]

Hello couple days ago I documented about my headaches now I have a sore on my lower leg just cherry red also sore in mouth same time and headache this am heavy feeling chest non-productive cough.Does this sound like lupus flare? No Dr. has helped me figure out what is lupus flare;sjogrens;or fibromyalgia.