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All posts for the month July, 2011

Welcome Home, Stephanie

Published July 29, 2011 by Kristel Goodspeed-Correa

Welcome Home, Stephanie..

My daughter decided to move back home to Illinois to help me out.  I think its because she is worried about me.  She decided this after she visited here for a few weeks last summer.   I must have really looked horrible 😦

Perhaps seeing Lupus and it’s effects first-hand vs reading  my posts about it on facebook had something to do with it.  While I do post a lot about whats going on, I really make an effort to try not to post so much that I become a chronic complainer.  I tend to post mostly about new occurrences and not about stuff that may happen often or all the time.  (Ex vomiting…I may make a post once in a blue moon vs the reality of it which is a few times a week.  I figure no one really wants to hear about me tossing my cookies every couple of days due to the Methotrexate- YUCK!)

But, its hard NOT to notice something like that when you are in the same house.   Lupus, up close and personal…full disclosure.  It wont be as easy to “hide” what I might not want her to know because I dont want for her to worry unnecessarily.  On facebook, I could just chose not to talk about it or word it in a way that wasnt so scary.

So far she has started to clean things, which the apartment really needs because it is often difficult for me to do a decent job at it due to the RA and the Lupus.   I try to save most of my energy for work so usually by the time I get home, I am either too tired or in too much pain for scrubbing things down, etc.  That alone will be a big help.

She is also going to try to get a job to help out a little that way also.  Another good thing.

One of the things I may have to get used to though, is her having friends over much more than I had company over before.  When I feel horrible, I may not feel like having people over, etc..  She’s an adult now, and where she is helping out, she should be able to have guests over type thing.  Especially worried about overnight guests or guests who stay late into the night.   Hopefully we can figure something out about this so it doesnt get to be “too much” for either of us and before it becomes a problem.  I might be worrying for nothing. We’ll see and time will tell for that.

Its great to see her again.  I missed her while she was gone.  Hopefully, things work out and she doesnt get burned out or annoyed with “helping” much more than she may have anticipated, etc…

Lupus Sometimes Comes With Blessings When You Least Expect them

Published July 27, 2011 by Kristel Goodspeed-Correa

While I wouldnt wish Lupus upon anyone, not even my worst enemy..for me it has also come with some really fantastic blessings.
OMG, I can not begin to tell you how phenomenal my Lupus friends from all over the world are.  We are just like one huge family and truly look out for one another and help each other when the times are tough.  I honestly could not have asked to associated with a greater group of people.  I love you all xxooxx ❤

I came home from work today to an incredible gift awaiting me on my facebook wall.  My friend, Virginia Jones had this image created especially for me from The Ink Spot https://www.facebook.com/pages/The-Ink-Spot/131346203577183 .

What really makes it special is that this is a gift that comes straight from the heart.  I had NO IDEA Virginia was having it made for me..  I LOVE IT, its so beautiful.

Thank you Virginia, that truly made my day!  It came when I needed a pick me up because I havent felt well in a few days.  I really needed something to make me feel better.   You are truly a one of my blessings

Music~ helps soothe the soul & pick up your spirits when feeling totally horrible

Published July 24, 2011 by Kristel Goodspeed-Correa

Music <–Truly one of life’s blessings when it comes to making people feel better.  God bless Youtube!  Best invention ever when it comes to helping chronically ill people like myself to feel better.  Of course, YouTube would be nothing if it was not for the talented artists who share their music with the world.  Thank you, from the bottom of my heart.

No matter what my mood is, I can always find some song out there  to help me feel better. Music has the ability to evoke feelings that help cleanse away whatever troubles are building up deep down in the sub-conscience.  While it wont take away the realities of having two major illnesses nor the aches and pains that those diseases inflict upon me, it does have a way of changing my mood and attitude into a better and more positive one.

Music is in my blood.  My father was a drummer for many years while I was growing up.  Although I have no natural musical talents of my own, I think the rhythms and beats must pump through my veins, giving me life just the same.

I have the ability to get completely lost in a song where I have no perception of anything going on around me.  The walls could probably crash in around me and I wouldn’t have a clue.  I am in my own little world 🙂

I will listen to some songs over and over again.  Especially if I am in a sad mood.  However long it takes to get me to cry and get it out of my system.  Once those sad feelings are released, I feel tons better- like a huge weight was lifted off my shoulders.

My neighbors probably hate my gutts when I get into some songs.  I make a pretend microphone with my fist and sing my heart out (just not well, I am afraid).  My animals like my singing though.  I sing to them all the time  LOL  Poor things, they must be tone-deaf  😉  My shorkie, Hope, likes when I dance and sing to her.

Music is a great escape from the realities of our life, even if just for a little while.  Sometimes we need a break from all of life’s problems.  So next time you arent feeling well, try listening and getting lost in some music…it might do wonders for you.

Until next time…Dont stop thinkin’ about Tomorrow .  It WILL get better, tomorrow is a new day

 

 

 

 

My National Data Bank For Rheumatic Diseases results for July

Published July 19, 2011 by Kristel Goodspeed-Correa

Back in October of 2010, I saw an article on the Arthritis Foundation’s website about that National Data Bank for Rheumatic Diseases.  http://www.arthritis-research.org/.

Founded in 1998, the National Data Bank for Rheumatic Diseases (NDB) performs unique clinical research in rheumatoid arthritis, osteoarthritis, fibromyalgia, lupus and other rheumatic diseases. The NDB is dedicated to improving the treatment and outcomes of these conditions. Every six months more than 10,000 people contribute to this important work by answering questions about their condition and how it affects their lives. The NDB is an independent, non-profit research group.

They’ve been following my case now since October 2010 and basically I have agreed that they could have access to my past, present and future medical records  in an effort for researchers to gain better insights into rheumatic diseases…mine being Lupus SLE and Rheumatoid Arthritis.

Every 6 months, they email me a questionnaire to fill out on how I think I am feeling, etc.  All I have to do is answer questions and update them on any new medications, etc.

At the end of the questionnaire, they provide you with a chart of your progress for your own records as well as your physician’s.  As you can see, I do much better in the summer months than the winter ones.  It will be interesting to see how much this changes in time when I am in the program longer.

One of the things NOT REFLECTED here however, was that nasty 2 month + flare I went through because most of the questions asked this time around were of how I have felt during the past week vs during the past 6 months

Definitions:
For these scores, a lower score means less trouble or pain.
HAQ (0-3 scale) –  Health Assessment Questionnaire – measures functional status (20+ questions).
HAQ-II (0-3 scale) – A 10-question version of HAQ. In order to easily see the HAQ & HAQ-II scores on the graph, they were multiplied by 10/3.
Pain – (0 – 10 scale) Overall body pain.
Global – (0 – 10 scale) An overall Global assessment of disease activity.
Fatigue – (0 – 10 scale) An assessment of your fatigue level.
Sleep – (0 – 10 scale) An assessment of problems with sleep.
The Flow Sheet Results show the recent scores we have for you so you can see how your scores have changed over time. If a period is missing, that is because we did not receive a completed questionnaire from you for that six-month period.

National Data Bank for Rheumatic Diseases
1035 N Emporia Suite 288
Wichita, KS 67214
Phone: (316) 263-2125
Fax: (316) 263-0761
WebQuest@Arthritis-Research.org
http://www.Arthritis-Research.org

Cure to Lupus & RA- like the “Genie in the bottle… come, come, come let me out!”

Published July 8, 2011 by Kristel Goodspeed-Correa

The Cures to Lupus and RA are like the “Genie in Bottle”, waiting for someone to find them and let them out.  Hopefully someone rubs that bottle the right way soon and makes all of our wishes come true !  Come Set them free!  We’ve been waiting a long time 😉

Personally I am really getting tired of being in some degree of pain all the time.  Every day its something.  Granted, some days are better than others, but you know…it gets old very fast!  It ranges anywhere from a dull, throbbing pain to an OMG I want to saw my own leg off because it might hurt less type of pain.

Some days its the Big Bad Wolf of Lupus messing with me, other days its the Gargoyle of RA, and every once in awhile I get really lucky and have them both double-team me at once!  [eyeroll]

Tonight’s pain du jour for instance is in my hands, wrists, and in my neck.  I was trying to count the cash drawers at work and my fingers refused to cooperate when I was counting the money.  They apparently had minds of their own and it wasnt holding cash.  Now my neck on the other hand, literally feels like someone is trying to pop it off my shoulders (like a Barbie doll).  It is seriously hurting.   So far, I have taken Tramadol and waiting for it to kick in but its not helping as of yet anyhow.

I have Vicodin that I can potentially take in my arsenal of pain meds but I really try to avoid it if at all possible.  I am super paranoid of becoming addicted to my pain medications.  I also cant stand the side effects it has on me.  Last time I took it, I sweated so profusely that the sweat was pouring off me like I was in the shower!!!  I was soaked.  I even had to strip completely naked and it was still pouring off me!  Then on top of that, I get so dizzy that I worry I will fall and with my luck probably break a hip or something!

I am trying my best to be patient while waiting for Medical Researchers to find the cures for these Autoimmune diseases, but lack of sleep seriously does a number on my patience level these days.  Insomnia is probably #2 on my most common problems with these diseases.  I forget what sleep is anymore since I seldom get any 😦

I do know in my heart that its only a matter of time before the Researchers figure out the pieces to these complex puzzles.  It will be like releasing the Genie from the bottle when they do.  I hope to see it in my lifetime

Hallelujah! Sleep at last!

Published July 5, 2011 by Kristel Goodspeed-Correa

[Doing the Happy Lupie Dance]

Its about time!   I actually got my first decent night’s sleep in I dont know how long !  Ages!!!    Woot!  Slept  from 8pm-4:30am  yayayayayayayayay!

Normally, I am lucky if I can sneak in an average of 4 hours.  Most nights its less than that, but occasionally I have slept as many as 6 consecutive hours, although  it isnt too often, much to my dismay.   😦

My job requires me to work varying shifts…sometimes I have the opening shift, sometimes the closing shift and once in awhile I may get a 12 hour shift!  The worst ones for me are close one night and then open again the next morning.  I can pretty much guarantee that I am going into work on NO sleep at all on those days.

Often I joke that my Big Bad Wolf of Lupus must be really nosey.  He just has to KNOW what all my international friends are up to at all hours of the day!  He needs to get a life, huh? LOL   Maybe he needs to find a new hobby, too.   Hasn’t he ever heard of email? 😉

Lets hope Wolfie continues to allow me to sleep a bit more [fingers crossed]

Have your own tears ever caused a chemical burn on your skin?

Published July 3, 2011 by Kristel Goodspeed-Correa

This is a NEW symptom for me..have never seen anything like it so wondering if anyone else has experienced it.  Is it Lupus-related?  Sjogrens maybe?  I do have lots of issues with dry eyes on occasion [shrug]

Acidic tears?  PH-balance way off???  very weird…What are  YOUR thoughts?

Now this morning when I woke up, my eyes were swollen shut.  They literally looked like I had just finished some boxing match and got hit in the eye area over and over again.  Thats how swollen they were.

The entire eye area has been stinging and burning all day.  Its getting less as time goes on but heres some pictures to check out.  Keep in mind, these were taken at least 24+ hours after having myself a good cry.

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