Happy New Year!!

I know I haven't been on in a while...had my biggest flare ever and went on disability...but am on the mend...can go into more later but I want to wish all of you a Happy New Year and wish you all the absolute best year. I pray this year changes the lives of all of you, my online friends, and whatever condition(s) you may have give you a break and u may even experience remissions!

My hope for all of you is that you make a resolution to take care of you this year. Don't push too much, but the healthier you can be and more active without pushing too much I wish for all of you!!

My thoughts and prayers are really with all of you because I know what the bottom feels like and I'm working my way back up...that's all I can wish for all of you...and when you're at the bottom, please remember you are never alone! Best wishes for a happy and healthIER new year! <3

Sorry it's been so long...quite a flare

So it's been a while since I've written.  Summer was awkward because I spent most of it in bed.  From a cold to the flu to bronchitis to what the thought was pneumonia to something causing my cartilage on my ribs to get inflamed...then just regular flares of fibro and IC.  My pelvic pain and vulvar pain has really been flaring since the lupus has been acting up and I'm not sure why.  And finally over the top lupus flares - I guess is what i found out they are.  All of my joints and legs.  I'm on steroids now so am guessing the pounds will come back with that.

In any case, enough complaining - my family is walking the lupus loop for me in my area this weekend and I've made some jewelry to sell there where my grandma will be manning a table with me so that will be exciting. Also, I was watching "Lie to Me" the other day and they mentioned a man who's wife had lupus.  Its always attention grabbing when you hear it out there and think every little bit helps.

In any case, sorry so short...I'm on a very awkward schedule until these meds take affect and the fatigue has been overwhelming except at night of course when I'm in the most pain and wide awake!  Hope you all are doing fantastic and flare free :)

Lupus commercial????!!!

So at this point, I'm used to CONSTANTLY seeing those lyrica commercials that continuously remind me of the amazing medication for all of the pain of fibromyalgia I have that it didn't help.  Not that its not an amazing medication (I have friends that it just worked wonders for and that's awesome!).  But personally, I cant help but getting bummed out and changing the channel every time I see the commercial.  I don't think its the lyrica...I think its just the constant commercial about Fibro and I love the awareness but its still frustrating.

So this morning I was sitting in front of the mirror getting ready for a business trip I didn't end up taking because I was in too much pain.  Lately it's been every joint, but doesn't stop there.  Especially my legs but sometimes my arms...feels like my bones are from my hips to my toes and from my shoulders to fingers, exploding from the inside out! Ok maybe a better way to describe it is I completely broke my foot about 2 years ago and about a month in...that still sharp if I step on it but constantly nagging sore and strong pain that you can't get out of your head.  I know realistically its probably the muscles/tendons/etc. surrounding the bone, but boy it feels like my bones just hate me!!!  Anyway - I finally thought I would be able to get out of bed this week to get to this meeting that's about 2 hours away in our other office, but after I did my hair and my meds kicked in...still felt like I hadn't taken anything.  When it gets like that, pushing on the brakes on my car is so painful, I decided driving wasnt in the cards this morning.

So anyway for some odd reason I think CNN or one of those strictly news channels was on - I usually turn a music channel on in the morning, but was too lazy to find the remote.  They were talking about social media marketing anyway which is one of the things I do for a living so I figured, eh...I can consider this working right?  Then I'm looking in the mirror and a commercial comes on and I hear..."my joints hurt so bad I wake up in pain every day"...ok...could be that RA commercial...so I keep listening..."I wanna know why my hair is falling out" - ouch.  Makes me think back to 2 nights ok sitting in the shower crying as I picked up clumps of hair from clogging the drain...then pulled off handfulls from my hairbrush...ok now you have my attention a little more..."a little pain in my knee...that's how it started"...wow same here..huh...this is weird.  Not a commercial I've heard before...but sounding so familiar...I still didn't look up at the tv. Then "this rash on my face?" - which I don't have much problem with thankfully...but that got my attention immediately to look up at the tv in time to see a girl...25...my age say "It feels like my body is attacking me". Finishing with a woman saying when you don't have answers it may be time to ask the right question - and back to the girl on the examining table - "Could I have lupus?"

So I was stunned.  Before I was diagnosed, I had hardly heard anything about this disease let alone seen any commercials about it.  And now...long awaiting a diagnosis but only 2 months in...here's this commercial describing everything seemingly out of nowhere staring me in the face.  For the first time, I didn't have the urge to throw up and turn it off as quickly as possible, but thought...wow - thank God.  This disease needs all the attention it can get and this commercial should play as much as the fibro one!  Granted, its a PSA from the lupus foundation of america, not a pharmaceutical company but I was actually happy about it!

Anyway, sorry for the babbling, but usually I hate the tv reminders...I feel so distant from them.  But this one I felt connected to!  Here's the link to the PSA's - the one I saw was the last one (multicultural) so be sure to check it out.

http://www.lupus.org/newsite/pages/ad-council-psa.html

Hope you all are doing well..i've been really sick so I haven't had much time or energy to post.  I know its hard on days like these for me...but I'm trying to think of the good things...and trying to stay distracted.  Have a great weekend :)

Snoops Family on the View - Daughter Cori has Lupus

Well this is just a quick post and I'm behind a few weeks, but I found this link to the View website from August 6th (their interview is the 2nd 2 segments):

http://abc.go.com/watch/the-view/SH559080/VD5579269/the-view-86

Although they didn't go into too much detail about the disease and what it can do, they brought up some great facts about upcoming medications, how difficult it is to diagnose, what it can do to young children, how it can take so long to diagnose and the frustration around that (especially for someone like Snoop Dogg's daughter - someone that may be considered "high priority") - it still took them a long time to diagnose her.

And hat's off to this amazing girl who looked just so stylish and great up there and her message is so promising!  Something that some of us lose sight of when we're older and juggling a lot of things in life.  In each of our stages in life I think this disease poses new challenges and although I consider the difficulties of paying the bills, going to work, finding time for a social life, spending time with family and my boyfriend, and trying to deal with this difficult - the youth that have it have to deal with medications, embarassing rashes, hair loss - something that is still difficult for us, but we can figure out - they have to deal with harassment from school friends, being too tired to play and maybe not really understanding.  I just think its great that they went on the show and spoke up about how it affected their lives and - if lupus could ever be a good thing - brought her family back together. 

Also notice snoop rockin the lupus wristbands!

Whether you fall...

So for all of you perfectionists out there like me...or just anyone really, having a chronic illness can be so depressing in the fact you may not be as good at things as you used to.  Personally, I was athletic, smart, a go getter, everything on top of the world with places to go and people to see.  I'm not giving all that up, but a huge chunk of my life is now devoted to chronic illness.  I can't do too much in terms of athletic activities unless it's planned or I know I'm going to hurt and adjust my schedule accordingly.  I personally feel stupid now - because i can't remember things, I space out, I get distracted, I dont understand as well and i can't find the words I'm looking for.  I won't go for a lot of positions because I simply can't be there all the time.  Thankfully I got my masters degree before the bigger issues started to kick in because hopefully that will grant me some leniency in looking for jobs in the future as far as time off (and not financial gain as originally planned).  But it is what it is - we have to take what we are given and run with it right?

So I'm obsessed with music and I've been looking for some uplifting songs and found one today by Tracey Bonham called "Whether you fall" - on youtube then downloaded it from itunes.  I love it -the theme/lyrics of the chorus - "whether you fall...means nothing at all. It's whether you get up".

Whether it's today, tomorrow, an hour from now...we're going to have our "downs" a lot more than other people...but we have to take responsibility for our "ups".  We're going to fall...who cares - we have to get up and keep on going to be happy...only we can make ourselves truly happy by going out and getting it...whatever that is.  Please go check out the song - I really think you all will relate and like it!  Let me know what you think!

p.s. Also check out "stronger woman" by Jewel...really great :)

"I Think I'll Fall Apart Today"....something for everyone

So I had to move back in with my parents this weekend because my sublease was up and my house isn't ready yet, which is good and bad, but in the process of cleaning out I found this short poem I wrote one of the weekends I came home to watch the dog while my parents were away.  I can't remember the exact weekend - damned memory - but I do remember it was a day I was so emotional and felt so guilty for feeling that way...then I realized that I'm allowed to throw a pity party for myself every now and then.  As are all of you.

I'm 26 for god sakes and going through a bunch of stuff people don't understand.  Even though I do get upset sometimes my parents think I'm in a deep depression just when I'm exhausted all the time and want to stay in bed and watch tv....I'm freakin tired, not in a major depression.  Sure I'm depressed, but my lifes not over because I don't want to go to the mall and would rather spend a weekend day in bed saving my energy.  Yes their my parents and "someday *fingers crossed* I will understand" - plus this whole sickness has put them through hell so I understand their concerns...anyway - I digress.  Many of you may have heard the blog "The Spoon Theory" by Christine Miserandino on  http://www.butyoudontlooksick.com/.  More of the lupus folks may have heard it, but it really makes sense for every one of the diseases that us with chronic illnesses have and what we have to live with every day.  It's different for each and every one of us but its so amazing so please please read it....it may be a great way for you to share with your families what you have to go through every day!

In any case, so I found this "poem" I guess you could call it...more of just thoughts...I do a lot of writing.  But I could tell from re-reading it I was upset and then just decided I was going to let myself fall apart and that was ok.  Just like its ok for all of you to just completely fall apart sometimes...alone...around family, friends, significant others....whatever.  It's ok to just completely surrender to our feelings sometimes.  We can wake up tomorrow and be "strong", but sometimes we need it to put it all in perspective...so here's to those days:

I think I'll fall apart today
Tomorrow I'll pull myself together
After a little sleep
After a little rest
But tonight I'll cry til I have no more tears
I'll scream if I have to
I'll completely break down

Tomorrow I can be responsible
Tomorrow I can suck it up
Tomorrow I can realize it's not the end of the world
Tomorrow I can realize how much I have to be grateful for

But I think I'll fall apart today
Just let go and give in to my feelings
Think I'll fall apart today
Just stay in bed and cry

Tomorrow I'll be strong
And I'll remember how to get along
But I think I'll fall apart today....alone.

A new one to add to the list...I have lupus

Well, as I mentioned in my last post, I finally had my Rheumatologist visit 2 weeks ago.  Of course I had everything ready to go the night before - I keep these packets on hand with all my current meds, all my past meds, all my current/past treatments, all my doctors, family history, diagnoses, surgeries/procedures and symptoms.  From my experience Doctors LOVE it because I just highlight each section title and bullet point everything - its really easy for them to read and they get a better idea of the whole picture - especially things ive tried and they havent worked....so they can see how long and painful the struggle has been.  So of course I forgot this packet and all of my recent CT/Ultrasounds, etc.! I started freaking out because lately my memory has been so aweful I knew I couldn't recreate everything that was on that list and I knew I waited 5 months for this!  So in any case I did my best to draft it down while I waited, but she did the physical exam as well as listen to all of my symptoms etc.

She definitely agreed with the Fibromyalgia diagnosis and the CFS, but also thought I may have some arthritis and wanted to redo some blood tests as well as order some new ones, and get an Xray of my pelvis for arthritis in my SI region.  Well this was a Wednesday so she told me to call her the following Friday to discuss.  So after that loonnngg week and a half I called - go no response - called again, still nothing and finally left an after hour message - nada.  I was already soooo nervous (even though i really thought that just maybe she may find a little arthritis but that's it because I'd already had most of the big tests) - now I had to wait out the weekend.  Well Sunday night, I was outside and came in and had a message from her saying she was so  sorry she didn't get back to me and most of the tests weren't very concerning but there was one she wanted to talk to me about but she wouldn't be in until Tuesday - ugh...first when do doctors call with results at 7:30 on a Sunday night??? Second...two more days of torture!!

So I called yesterday even though she promised to call to make sure she had all of my numbers....then 5:30 rolled around and I thought - again??!?!!  Just then the phone rang and it was her. So of course I'm expecting to hear about the x-ray which I already know I have SI dysfunction and arthritis in my knee and a bit in my jaw so that wouldn't suprise me when she went straight to the ANA IFA test.  For those of you who don't know...the ANA blood test is a test for autoimmune diseases - the anti-nuclear antibody test by indirect immunofluorescent assay - some fancy words for a specific way of looking for autoimmune disease markers.  I had one done in March - just a plain titer and it was a little elevated but within normal limits, but apparently the IFA is the better version of the test.  Well this time it turned up positive.  It was in what she considered the middle of the results....not extremely high but definitely high and positive.

So what does this mean? My doctors and family have thought for some time now that I may have an auto immune disease because of all the different organs that have been affected and how many surgeries i've had and things I have been diagnosed with.  Just - after it came back last time - I was relieved.  Everything I have really sucks and is painful...but it's never going to hurt me or kill me.  I just have good days and bad days.  But now all of a sudden - not that it will happen, but things that have already been affected by previous surgeries/conditions like my heart, liver and kidneys are at risk...my organs are at risk.  A lot of people with lupus live a full life, but when their time comes, pass on from complications of lupus. Well Crap...crap crap crap.

On the plus side, she thinks its on the early side of things and everything is just being made to feel worse because of my Fibro and IC flaring.  She's starting me right away on an anti-malarial drug, when started early on with a lot of young women can bring the lupus to a slow progression and save any attacks on the organs themselves so I'm very happy to know this.

So now, I let my regular doctor know and told her what the Rheumatologist said and the medication she put me on and now in 2 weeks my doctor blocked a chunk of time to meet with me and talk about the diagnoses and my current medication list which is fairly expensive.  All I know is what keeps me able to work is the Soma 3xday and the Norco 3xday ( which I usually cut in half and spread out).  I actually went off most of my pain meds for almost a week last week to see what my real symptoms felt like (as I was working from home) and didnt realize just how much joint pain I had.  I also realized there's no way on earth I'd be able to work if I didn't have my meds.  I was in so much pain, was so stiff I couldn't get up and by afternoon was horrendous and absolutely couldn't sleep.

I am so nervous now that shes going to want to change these meds so now I've got 2 weeks to worry about that on top of everything else.  The savella has started to help with more of my pain in the extremities and the Celexa (only 10 mg at night) helps me sleep and level out my mood.  I'm decreasing the tramadol and only use the valium after sex now.  So I really am reducing these on my own.  I will just definitely have to see a specialist about medications if she doesn't want to prescribe them anymore...I Cant not work.  I also can't sit around or lay in bed all day in pain.  That may not even be what she wants to discuss, just so freaked out right now in general I guess.

So anyways, I'm trying not to get too overwhelmed....I've just always kind of expected the diagnoses I've gotten in the past and this one hit me like a ton of bricks.  I've got to do some more research about it in general as I haven't told anyone but my doctor yet - like my family and boyfriend need one more thing to worry about.  Anyway, sorry if I'm more Debbie downer today, but wanted to let you know how it went.

Trying to stay positive and knowledge is power so I'll feel more in control when I know and understand a bit more :)  Have wonderful weeks everyone!