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Author Topic: A Day In The Life Of A Lupie  (Read 13886 times)
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« on: August 26, 2007, 01:01:13 pm »

A Day In The Life Of A Lupie CandleSmilie

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.
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« Reply #1 on: August 26, 2007, 03:58:17 pm »

Well, I'll get this started.  It is a given that if I spend a day active, the next day will be a day of napping and feeling achy and crappy all day long.  Doesn't matter if it's a day out shopping or day in cleaning, the next day is hell for me.  I usually go grocery shopping first thing Sunday mornings, but since I spent the day shopping yesterday, I didn't manage to get up and moving until about 2pm today.  My husband has learned to accept this.  It's still hard on my daughter.  But she  is learning.  I'm on vacation this week from work so hopefully I can rejuvenate some.  I am seeing my DR this week. We are hoping he will agree to take me out of work.  I have more bad days than good.

PML 
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« Reply #2 on: August 26, 2007, 04:21:52 pm »

Well, I'll get this started.  It is a given that if I spend a day active, the next day will be a day of napping and feeling achy and crappy all day long.  Doesn't matter if it's a day out shopping or day in cleaning, the next day is hell for me.  I usually go grocery shopping first thing Sunday mornings, but since I spent the day shopping yesterday, I didn't manage to get up and moving until about 2pm today.  My husband has learned to accept this.  It's still hard on my daughter.  But she  is learning.  I'm on vacation this week from work so hopefully I can rejuvenate some.  I am seeing my DR this week. We are hoping he will agree to take me out of work.  I have more bad days than good.

PML 
Thank you PML,  litbflys
I saw myself in this post...have an active day, then it's down time. (sleeping or just laying around) But the other was I always shop for groceries on Sunday mornings. Before church gets out, I hate crowds and years ago I used to have these panic attacks in stores when they are busy. I still don't do well in crowds... cray
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www.LupusMCTD.com Represents:
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« Reply #3 on: August 26, 2007, 09:09:46 pm »

 litbflys I guess I can go next......
First I don't shop much at all....I can not take the lights in any stores..It hurts my eyes so bad I rather stay home in side.....But when I have to go, I wear my sun glasses no matter if it's night time or day time LOL...(.Picture that) coolsmiley
My hubby does all the food shopping B/C I am so like Kathy and can't be around lots of people for I also have panic and all that...But if I should have to go, I am really fast 3 bags of food and 300 dollars later, so that is one good reason why my hubby does the food shopping.... LOL
I also can relate to you PML I am so the same..If I do anything that is active in anyway the next week I Pay for it..
My mother in Law is 80 years old and  walk's 10 miles everyday and I can not even keep up with her that is bad....
My worst times are at night trying to go to sleep..I have such problems getting to sleep,But when I do, I can't get up early B/C I can barley move..So my hubby bought me a health bed,But it makes not much of a difference...... ababysleeps
I have a full plate let me tell you..I am a house wife and a mother and a grandmother, So I have a full house at all times...Just cleaning is hard on me and I have to depend on my hubby to help out,and he does and never complains...Not to my face anyway...LOL  la
He works 2 jobs one for him and one for me..Thats sad B/C he put's in so  whimper much time working and then having to come home and help out here it makes me so sad for him......
My body swells up if I don't have a nap and I feel like I will pass out with out a nap.....I have that typical Lupus mask on my face and its embarrassing to me B/C it looks like I am always  blsh So thats not good.....Anyway I am in a flare up as I speak and its very hard for me to just sit here and write this..But I did and so life goes on...I always look at others that are so sick and thing to myself life could be worse..So I thank God each and everyday that I am here on this earth.....Thats it for me NEXT! Blessing to all of you,Love Gail
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« Reply #4 on: August 26, 2007, 09:33:00 pm »

litbflys Thank you Gail,
Your story will help others see themselves and how they can cope with it and "if this is normal" to feel this way.

next...
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
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2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #5 on: August 27, 2007, 08:52:09 pm »

I'll take a crack at this... LOL
     I'm one of those a-typical lupies I guess.  In a lot of ways, I am grateful that I am able to get up every morning and go to work.  Not only do I work, but pretty soon I will be returning to classes!  I have 12 credits left of my BA degree in Liberal Studies- I've been attending a Saturday One-Day Program since 2003.  Something that prior to diagnosis etc, I probably would not have considered!  I would have muddled through weekly classes... driving me and my friends and family nuts in the process as I lost my battle with whatever illness was wreaking havoc on me.  Glad to know that is not how my life went, lol.

     But, my daily life has its waxes and wanes.  Periods where I have tons of energy and periods when all I want to do is sleep.  Thankfully, my energy levels have been rather high of late.  My work does well in keeping those levels up, actually.  When I'm active, I don't vegetate and sleep forever... messing up my sleep patterns etc.  School is going to mess with that though.  I'll be up studying till the wee hours... and of course Saturday class takes a lot out of me.  5 hours under the dreaded flourescent lights.  And actually, taking just one class is nothing compared to when I take 2!  When that happens... I might as well forget any kind of social life on the weekends.  I am lucky to make it past 9pm on Saturday night.  I pretty much need to go directly from class to wherever I am going to socialize or I will just go home and sleep!

      Still, I am one of the lucky ones.  I am able to work, go to school, and have fun.  For example, this weekend I participated in my first renaisance faire!  Granted, Saturday's weather (and Sunday too but not as bad) was not good "lupie" weather, but I had fun!  For the first time in my life I actually have a noticeable tan line (again not something we WANT to have as it means we've spent to much time in the sun) the flip side of all this?  I will need to spend the rest of the week careful of my sun exposure- even more so that usual- while at work.  Again, I'm lucky to have co-workers and a boss that understand my needs.  Even today, my boss reminded me to be more careful.  It is just that for most days, I don't feel like I have lupus.  If the worst I have to deal with right now is sore joints and a little fatigue... I'll take it.  I much prefer it to insomnia.  That will come when classes start up soon.  I will use it to my advantage though... the insomnia... but that is the future... now it is time for me to go grab my late night snack and get settled in for bed!
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« Reply #6 on: August 27, 2007, 08:56:24 pm »

 rose A, thats a wonderful story Lacy Anne..I am so glad that you are able to do all of what you do..Thank God and Bless your heart..Thinking and praying for you Love Gail
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« Reply #7 on: August 28, 2007, 06:25:05 am »

Good for you Lacey Anne... I used to have that kind of energy!!! I attended a local college full time then worked the night shift full time until I graduated and moved to the day shift full time.  Then I had a 30 minute drive home. I was working with about 3 to 4 hours of sleep a day. I hardly saw my husband.  But I graduated with honors!!! Yay for me.  I been working with that same company for 6 and half years now.  I have lost my energy... hopefully I'm just in a lull. Take care.

PML

 hlo

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« Reply #8 on: August 29, 2007, 09:44:22 am »

Ok so I went to the dr yesterday... he took me out of work until Nov 1st... he also gave me a pill to sleep at night so maybe i will have some energy during the day.  It's called Mirzatapine.  he said if that doesn't work then he will see if he can give me a stimulant for during the day and then I should be able to sleep at night.  I dunno if I like these suggestions but I will try them.. I will try almost anything at this point.  So I slept ok last night.. got up this morning.. tired of course.  I took my daughter to the mall to use her Build A Bear gift cards now I'm home and exhausted again... I'm going to eat lunch and then take a nap!!!!    ababysleeps

PML
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« Reply #9 on: August 29, 2007, 10:44:50 am »

Ok so I went to the dr yesterday... he took me out of work until Nov 1st... he also gave me a pill to sleep at night so maybe i will have some energy during the day.  It's called Mirzatapine.  he said if that doesn't work then he will see if he can give me a stimulant for during the day and then I should be able to sleep at night.  I dunno if I like these suggestions but I will try them.. I will try almost anything at this point.  So I slept ok last night.. got up this morning.. tired of course.  I took my daughter to the mall to use her Build A Bear gift cards now I'm home and exhausted again... I'm going to eat lunch and then take a nap!!!!    ababysleeps

PML
PML,
I'm glad he took you off work.   bflybouncy  This will give you time to adjust to your new meds.
Later I'll take a nap too but that's only because it's going to be 104* today!! I wheeze and my limbs swell up sooo bad.
Keep us posted, rest well ababysleeps
kathy
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #10 on: August 29, 2007, 11:23:04 am »

  i am so glad you were taken off work
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« Reply #11 on: August 29, 2007, 07:01:07 pm »

Thanks all of you for sharing! I so need to hear everyone share their stories, it gives me hope and inspiration to keep moving forward!

I just realized that I've been logged on the site since, Sunday!  idiot2
I've been passing out early each night......... Passing out in an upright position?!  ababysleeps 

PML, I'm just so darn excited that your doc is pulling  you out of work til Nov!  You will get that rest you need, and adjusted to meds! It'll do such wonders for you. I'm also glad that your DH   hart  supports you, some of us haven't had that expereince with our mates (present or past).


I am entering a new phase in my life, while living with MCTD. I am seperated several months from the husband. I am now a single Mum, with a 7 year old daughter. I have held a small cleaning business for over 15 yrs. When I started getting sick 4-5 years ago I had to enlist help on my jobs. I cannot do the work load, now even with help. It's kicking my butt. I stay home all weekend in my PJ's recovering from the week. I decided a few months ago to change my day job.   

 I live in Cal. and got connected to Voc Rehab because of the MCTD, and they are sending  me to a vocational school, to learn computer programs and applications so I can land an office job. I'll start school in a few weeks.
I only be working part-time during that duration, and as a result, I won't be making the income that I was. I had to go apply for Food Stamps and MediCal  cray  today!!! This was SOOOOO HARD for me to do!!!!! But I have to do it for my daughter and I. My ex's health insurance sux pond water and is going to make me go into  inot debt (PPO)! I won't be able to pay for  doc visits, blood lab tests or medication while in school!My daughters asthma meds run over 250. month without insurance.
(And to be honest, I've been killing myself trying to keep up with these  necessary monthly bills).

I'm excited about the new opportunity. I know that this is the best thing for the future of my daughter and I. I can get a job with the state of Cal, thru Voc Rehab's LEAP program. I can build a better furture for my daughter and I.  Sorry, this is so long!!!!
 bflystupid No wonder why I'm passing out in upright positions??!?! HELLO!   Hugs, Kim
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« Reply #12 on: August 29, 2007, 07:05:54 pm »

 sobbing Aw, you guys I am praying for all of you..Kimmy you know I am here for you when ever you need to just talk or what ever..Same goes for anyone of you okay? till then take care all I love you all.Love Gail hrt
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« Reply #13 on: August 29, 2007, 07:13:23 pm »

Kim,

It sounds as if you need a hug... so  hug....

PML   
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« Reply #14 on: August 29, 2007, 07:19:52 pm »

 rockingbaby Aw, PML that was so nice of you.....You are sweet!  Hope all goes good for you kim and food stamps and all that is what you have to do to take care of your loves...Pride has nothing to do with it okay.........Love you... PS I get food stamps oh well I worked all my life till 2003 and even then i do some volentare work just to get out you know..Take it easy and rest some okay ...Me sttv
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« Reply #15 on: August 29, 2007, 07:45:24 pm »

(((KIMMY)))  rose

I've been on Food Stamps years ago. At the time it was embarassing because we were young and didn't want to be labeled "welfare" but it was a time when we needed them. (Hubby was in a fatal accident , his Dad was killed and Dave's injuries were bad and could not work).

But even now I would not feel bad if I had to go apply for food stamps, as Dave worked his butt off through the years and his taxes helped pay for everyone esle to use them, why not us?

Now, CONGRATS on the new job career!!!   bflybouncy I hope it turns out to be what you will enjoy, I'm sure you will excel at it. I wish there was something to help you with the fatigue. (((KIM)))  Hit the sack  ababysleeps
I mailed you something off today. Be checking your mailbox tommorow or Friday  tpfngrs 
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
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« Reply #16 on: September 01, 2007, 12:32:50 am »

 smitten  Thanks all of you!

PML, I sure needed that hug!

 I appreciate the kind words that each of you extended to me  smch.

My counselor at Voc Rehab, suggested for me to go and apply for assistance, to help me off set cost of living, while I attend the Voc school.  I was approved for food stamps today,  and I actually wept when the case worker told me this. ( tears of relief and gratitude!)

It's been a whirlwind of activity these last few days, but it's all been positive steps forward. I thank you all for kind words of support! Each of you are gifts of hope and encouragement to me. Your examples light the road and help keep me motivated to move forward inspite of living with a chronic illness.

Two years ago right after my diagnosis my mum suggested that I go on
SSI, but I told her that I had to find ways to live  a quality life inspite of
the MCTD.  Being a member in this community inspires me so much. It has sparked my creative juices which have been dormant for quite a long time, while serving this community  CandleSmilie . Now that's just so cool!!!!

Kathy, I did get your envelope today!!!!!!!   smch  You're so thoughtful!
Thanks for your kindness, it means the world to me.
Keeping the faith  and wishing you all pain free days,. Love, Kim
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« Reply #17 on: September 01, 2007, 12:06:43 pm »

Kimmy,
If your little girl is around age 5 there is a food program called WIC.
I used that when my I was on food stamps, my son was under 5. It allowed me to go get FREE a month's supply of milk, eggs, cheese, butter, orange juice, apple juice, Kix cereal etc.

Ask your caseworker about it, I was more grateful for that food program more than food stamps as it was items you use daily and so much of.

Have a great weekend, stay out of this heat wace, trople digits again today. And it's so muggy feeling down this way YUCK! I want the Delta breezes to cool us off so I can sleep at night smiley
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #18 on: September 01, 2007, 11:44:45 pm »

 wave Kathy~

Thanks for the suggestions! My daughter is 7 and a half yrs old,  so we won't qualify for WIC. I know that this program helps many families.
I'd definatley apply if she were    ababydropb  younger.

The food stamps are going to help us tremendously, while I attend the school! Thank God, I pocketed my pride and took a serious appraisal of what our needs are, and will be for the next several months. This will keep the cupboards and fridge stocked.

Also, when I've had time on the weekends, I've been making large batches of meals and seperating them into quart size freezer bags. Labeling them and freezing them for easy meal nights.

And, girl, it has been evil  evil hot  and very humid here in the central valley too. That hot air that was blowing on you, does feel good, because it's at least some movement in the air swirling around us!
 I just opened the windows and the delta breeze is in the air!
Thanks, Kathy! wink  Love, Kimmy
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« Reply #19 on: September 02, 2007, 09:24:57 am »

Hi All,
              Well it's pretty hot here to..But nothing like it had been. Today is very sunny and very bright...But I will take it as it is thank you...No complaints....Well, Bill left for he Montel show today,He will be there till Thursday with us. We go on Tuesday..I am getting excited..Today is my brother and sister's B-Day another party oh what to do? LOL..  smchTake care all Love you,Gail
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« Reply #20 on: September 02, 2007, 11:37:09 pm »

 rolleyes  Lupie synchronicity moment today:

On my way home, I stopped at the gas station for gas, and behind the cashier was a Lupus magnet ribbon hanging on the wall. I asked her if it was for sale. She said that she found it outside in the car wash and that if I wanted it I could have it! bflybouncy
The ribbon says,   litbflys "Cure Lupus."  litbflys How cool is that!

Encouraging quote for me today, " Everyone wants endurance, but not everyone wants to endure."  Lupies live endurance.

I hope that you're all doing well and keeping the faith.
PS: if the chit is hitting the fan during my school journey, you all best remind me of that endurance quote!   wink
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« Reply #21 on: September 02, 2007, 11:40:55 pm »

 litbflys Kimmy that is wicked cool.....I have never seen one before..How great..God is always watching out for us right? Take care sista,Love Gail rockingbaby  litbflys
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« Reply #22 on: September 03, 2007, 08:58:41 am »

rolleyes  Lupie synchronicity moment today:

On my way home, I stopped at the gas station for gas, and behind the cashier was a Lupus magnet ribbon hanging on the wall. I asked her if it was for sale. She said that she found it outside in the car wash and that if I wanted it I could have it! bflybouncy
The ribbon says,   litbflys "Cure Lupus."  litbflys How cool is that!

Encouraging quote for me today, " Everyone wants endurance, but not  everyone wants to endure."  Lupies live endurance.

I hope that you're all doing well and keeping the faith.
PS: if the chit is hitting the fan during my school journey, you all best remind me of that endurance quote!   wink

bflydance bflybouncy synchronicity bflydance bflybouncy
Yeee Haw!!!! (As my 3 yr old Grandson says)
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #23 on: September 07, 2007, 12:25:02 pm »

Coincidence? I find it very odd... I found out today, as i stood at the bus stop with my daughter, that my next door neighbor has undefined connective disease and her doctor is my doctor.  Earlier in the year I found out that the neighbor (our neighborhood is built in loops) around the bend hasn't been diagnosed officially but her rheumy thinks she has fibro. She also used to see my doctor. Crazy... is it something in the water?

PML
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« Reply #24 on: September 07, 2007, 12:57:10 pm »

Coincidence? I find it very odd... I found out today, as i stood at the bus stop with my daughter, that my next door neighbor has undefined connective disease and her doctor is my doctor.  Earlier in the year I found out that the neighbor (our neighborhood is built in loops) around the bend hasn't been diagnosed officially but her rheumy thinks she has fibro. She also used to see my doctor. Crazy... is it something in the water?

PML
i believe it's in the water. look how many are members here, yet you don't see that many members on aol boards.
look how many people have blogs on their fibro or on my space. i thought lupus and mctd was a rare occurrence. makes you wonder
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« Reply #25 on: September 07, 2007, 01:12:05 pm »

Coincidence? I find it very odd... I found out today, as i stood at the bus stop with my daughter, that my next door neighbor has undefined connective disease and her doctor is my doctor.  Earlier in the year I found out that the neighbor (our neighborhood is built in loops) around the bend hasn't been diagnosed officially but her rheumy thinks she has fibro. She also used to see my doctor. Crazy... is it something in the water?

PML
PML & Crocket  litbflys
I tend to agree with you girls.
Lupus and or MCTD (UCTD) used to be rare and unheard of.Is it something we drink? eat? not exercising enough? What I noticed from all our members is the amount of YOUNG members we have in their 20's and early 30's.

It's very scarey for the future generations to come since there is no known cure, no reason, no nothing  "we just have it".

This morning over in research I posted some info on Lupus and Lupus & RA info found in genes.http://www.lupusmctd.com/index.php?topic=2548.0
You might want to read it .


Kathy
« Last Edit: September 07, 2007, 01:18:21 pm by Admin » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #26 on: September 07, 2007, 01:22:35 pm »

I was told it was rare and everything I read is that it is rare... the only thing that is rare around here is my husbands steak!!!  The Lupus Foundation of America is urging people like us to tell our politicians to support H.R. 1192...  please read this and decide for your self. My daughter is going to be selling lemonade at our garage sale in two weeks for the Lupus Foundation.  She is 5... if she can give up those quarters for our health... then hopefully some one else will become moved and want more for people like us.

PML
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« Reply #27 on: September 07, 2007, 01:31:03 pm »

I was told it was rare and everything I read is that it is rare... the only thing that is rare around here is my husbands steak!!!  The Lupus Foundation of America is urging people like us to tell our politicians to support H.R. 1192...  please read this and decide for your self. My daughter is going to be selling lemonade at our garage sale in two weeks for the Lupus Foundation.  She is 5... if she can give up those quarters for our health... then hopefully some one else will become moved and want more for people like us.

PML
[size=14pt]PML,
I have the whole bill on My Space (I'm LupusMCTD). It might be included in this link below.
Here is what I do have on this site regarding that bill http://www.lupusmctd.com/index.php?topic=1695.0

Bless your 5 yr old's heart. Would you like some cards with our website info on it for her to pass out?
If so email me privatly or send me a PM with your address I'll get them out today.

Kathy[/size]
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I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #28 on: September 07, 2007, 01:40:55 pm »

 LOL PML God Bless you and your daughter......Rare steak LOL...That was funny! Take care!
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« Reply #29 on: September 08, 2007, 12:36:10 am »

 gdpst  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
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