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 :)

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!

And so it goes...

Well - I had planned to keep a more intimate and daily log of activities of the program, but I guess that was a bit ambitious considering all the work that went into it, family commitments, regular work, relationship stuff, etc.  Plus being just plain old exhausted by the time I got home and coming back to work was/is no different.  I officially "graduated" last Friday and only have some follow up and regular Dr. visits now.  It was bitter sweet...I really had grown accustomed to being there and following the program and the people and coming back to work while trying to get my house painted and prepared for me just is a little overwhelming.  I plan to spend a post really going through the aspects of the program and how beneficial it was for me.  I wish everyone had access to a program like this, but as I found out, I was one of the few working individuals - most were on some form of workers comp or disability as is common with chronic pain (and something I may end up dealing with in the future) so payments are less for these sorts of programs making them hard to stay afloat.  In any case, look out for that post as it will probably be long and layout some great strategies and suggestions for everyone around relaxation, some psychological aspects, stretching, pacing (taking breaks), putting yourself first, strengthening, knowing your boundaries, etc.  The intensity of the daily program overwhelmed me at first but now I finding it jumping into my mind frequently to "remember to do this and do that" and keep my proper body mechanics when lifting, moving sitting - something you wouldn't gain from an hourly weekly session.  I was truly blessed I had such amazing folks - both patients and staff - to get me through this.

I have my first new Rheumy appointment tomorrow and I'm actually really nervous.  Until now, I've been dealing with my PCP, pain specialists, physiatrists, my ob-gyn, and other doctors that don't really specialize in the stuff so we'll see how this goes.  I was really hoping to see her before I did the program, but I guess now she can evaluate me on where I am instead of where I was - which is in better physical shape, a stronger and more positive attitude towards the illnesses themselves (not that I don't have down days, believe me - especially since I've been going through a bout with a minor CFIDS flare going on 2 weeks now...) but I have a better understanding of things I can do to help myself.  In all the program really gave me more confidence and a sense of control and acceptence.  Those are 2 things that are really rare to feel in chronic pain patience and I am so thankful that I've gained that - because although feeling helpless at times still comes and goes - I have to control my life...not anyone else and certainly not a multitude of illnesses.  I'm the only one that stands between depression and happiness...there's still work I need to do on getting there, but knowledge is power, and acceptence of the hand I've been dealt is leading me to take control of my life again.  And thank goodness for that - or we just start spiraling downward and I'm far to young for that :)

So in any case I'm excited and nervous all at the same time about the Rheumatologist appointment.  I have more knowledge about my body now, and am on some new meds including the Savella and Lidocaine patches for my SI dysfunction, but I'm having some other difficulties and stressors in my life that have things flared up and I've just heard that "nothing I can do" phrase so many times I guess its what I come to expect.  With these types of illnesses, I've found it's more on me - to read the signs, to try to prevent them from at least getting worse if they've already started.  I really don't know that there's anything else she can do for me.  The only thing that's really been bothering me (other than this darn CFIDS flu headache and this is just me whining because I've had it for 2 weeks and nothing helps, lol) is my memory/mind/head.  All the things they say about the fog - memory loss, word loss - at a young age I have accomplished many things and was always the top of the class in secondary school, college and graduate school - but I've never felt more stupid in my life - and it affects everything, from getting me incredibly frustrated at home, to slowing my progress at work because I can't concentrate, get exhausted, forget things, can't complete anything - so I've read some studies about Adderall and there's a newer one, Vyvanse that can not only hope with the focusing and staying awake but can actually help some fibro patients with pain  - so maybe she'll have some insight into at least that aspect of things.  Not that I want to start another med, but I've been decreasing so many of them and this one would help an important part of my life that I need to keep up on - work.  My pain management doctor said that it was one of the most important things - to keep on working because his patients that dont usually fall into a deep depression and withdrawl when they don't have a purpose every day.  I even notice it in myself when I work from home...I do my work but I dont feel like doing anything...crawl into bed and be alone and end up feeling depressed and like crap.  I don't want to live like that.

Well in any case, look out for the overview of the program as well as my experience with the Rheumy.  I hope you all are doing well and able to deal with your pain as we go through some weather changes.  I know that can be rough.  It was so comforting for the last 2 months to be around people who understood what I'm going through...and didn't judge me that just because I may look like a cute, fit and fine 26 year old girl to some of the older folks that were there - so why the heck would I be here...it can't be that bad right? - that they actually understood me and I made some friends for life - that's the best part.  No question in their minds that I deserved to be there because they  understood.  And so do all of you.  I hope you all take comfort in the fact that I really do understand aspects of this...and so do others...you have friends out there and here that literally feel your pain...please keep your chin up and take care of yourselves!

Serenity Prayer

~Grant me the SERENITY to accept the things I cannot change; the COURAGE to change the things I can;
and the WISDOM to know the difference. ~


You'll notice I didn't lead with the traditional "God" line - not because of any feelings of mine, but those of every faith should take solice in this prayer.  It's gotten me through a lot over these past few weeks and I hope it gets me through a lot more my whole life.  I'm still accepting what's happening to me - although the why is always out there. I'm a really good person and for the most part am incredibly giving and loving and warm...and it seems things just happen to me.  Maybe it's a weakness in the same  - that I'm naive and gullable....but I'd rather be the way I am than any other way.

The Courage I think is the hardest part.  When we're feeling our worst...it takes a lot of courage to get out of bed.  It takes a lot of courage to leave work when we need to.  It takes a lot of courage to talk about - to deal with - to NOT feel guilty about...leaving things undone....it takes a lot of courage to put our health before that of others so we can take care of them in the end.

And the wisdom to know the difference.  In chronic pain - this can be the trickiest....we may not know where to draw that line...its a thin, and often moving line.  Sometimes we over do it....sometimes we feel we could do more...but its tough.  So lets try to work on it.

I reached my 2 week mark on Thursday and then I was out Friday due to skin pain that refrained me from keeping my shirt over my shoulders which is inappropriate - and also prevented me from doing half of my training which requires me to lie on my back which I couldn't do.   I really do have much to catch up on about this program but it'll have to wait until an evening I haven't already taken my melatonin for the night.

Also started on Savella late last week....so far so good.  Only thing I notice is a little itchiness and a small rashes which go away quickly with Eucalyptus and Lavender oil but my fingers are sooooo crossed!

Wishing you all well :)

Welcome to my Blog!

So this is my first post since deciding to start blogging about my personal experiences with chronic pain.  I titled it "Chronic Pelvic Pain" as that's my main complaint, but I suffer from various other types of chronic pain (you'll notice the weblink is actually 'chronicpainwontwin') so all types of things will come up at one time or another I'm sure.  I chose to start blogging about my experiences after spending years online trying to find others who were going through what I was going through and their stories.  No matter how much medical information you can dig up, it's personal experiences that give you that feeling of "Yes! Finally - someone else understands and knows what I'm going through...I'm not just dreaming this up - it's real!".  Some days I think I'm so lucky that  (knock on wood) nothing I have is going to kill me, so that's a plus right?!  Other days I just self pity and -lets be blunt- it just friggin sucks!  It takes a toll on you, your friends, your family, your significant other, work....etc.  And it really just SUCKS!  But, I'm still one lucky girl for everything I've been given.

So I guess I'll start out with my story so you can understand a little about who I am.  First, I'll start out by saying I want to offer up my personal experiences so folks can learn from them and understand the different things I've personally been through.  That being said; A) I'll be fairly blunt and graphic if need be because a lot of my problems revolve around my pelvis and vagina (or va jay-jay as my dad MAKES me call it), and B) these are only my experiences and for every bad or good experience I've had - I've talked to 20 people that have had the opposite reaction - so always talk things over with a doctor...this is just my story :)

So, I'm 26 and am an east coast gal.  My undergraduate degree is in Psychology (so I can self-diagnose my craziness :) ) and my graduate degree is in business.  I work in Marketing and have THE best family ever.  Crazy younger brother who I adore even if he does drive me crazy sometimes, the most loving and caring dad ever (epitome of daddy's little girl here, yup I admit it and I know he'd do anything for me) and my mom is just my best friend in the world.  I feel guilty because she hates that I am going through this...she's always the one researching for me and I always have the best time with her.  I also have the best boyfriend in the world - he goes to so many of my appointments (we're talking going to physical therapy appointments and learning how to do the internal treatments...not in a good way, haha and getting shots "up there"). Even if he doesn't neccessarily understand, he is always there for me and takes care of me.  I am a very lucky girl to have someone who is being supportive and I love him for that. My best friend in the world has been with me since I was 6 and I'll always have her to turn to. Have some wonderful grandparents as well....both here and gone...still helps to talk to them even if they aren't here somtimes :)  So I have to say that even if these people can be cause of my stress sometimes - I'd never give them up :) 

Now I'll talk a little about this whole Chronic Pain thing - although I'll get into details about my treatment experiences in later posts.  Just will start from the beginning and bring you all up to now - that way you know the whole story - so sorry this will be a long one :)  So from the beginning, as long as I can remember I would get incredible pain in my right kidney area once in a blue moon when I started to urinate.  Comes on rather intense when I go to start a urine stream and builds to wayy above a 10 on the pain scale if I don't stop immediately. Still happens every now and again and they haven't figured that one out. Starting having UTI's (or what I thought were UTI's) around 18, around when I started having really bad allergy/sinus problems.  Eventually, ( in 2005) I was sent to a urologist for a cystoscopy with hydrodistention and it didn't come back with much of anything.

So...moving along, my senior year in college (2006), I began having tons of pain in my kidney area and long story short - they found a cyst about the size of a baseball on top of my right kidney which at the time could have been attached to my kidney, liver, or adrenal gland - they didn't know.  And the folks in my area wouldn't operate since they didn't know which system it was.  So I went and had that removed (again, I'll go into more detail later if folks are interested) and it turns out it was in my adrenal gland so they removed that and I was on my way hoping that my problems would go away with that huge cyst!

Needless to say that pain came back and I was devestated...as did the "UTI's" but they were worse, I was in constant pain in my pelvis and my muscles felt so tight! I felt like A) I had done a full groin work-out the day before and B) like I got nailed with a baseball bat.  After it continued to get worse, I was sent for another cystoscopy with hydrodistention in 2007.  Came back with severe Interstitial Cystitis.  I'll also explain more about this in another post, but for those of you who don't know, my bladder is chronically inflamed and has little bloodspots on them called glomerations.  There's no cure and many theories, but the feeling can basically be described as pouring alcohol on a wound.  Almost immediately after that I was diagnosed with Pelvic Floor Dysfunction or PFD - i.e. lots of problems with the muscles in my pelvis.

So along the way I've tried many treatments that I'll get into, but most recently (last year) I had my gallbladder out due to chronic cholecystitis, then a kidney stone, then my appendix out.  After that I just felt like crap for a while because it irritated everything!  And my vagina started KILLING me - to touch, to have sex, to wash, to wear underwear - it was crazy!  That's when I was diagnosed with both Vulvodynia (general pain down there) and Vulvar Vestibulitis (specific painful areas right inside the vagina).  I've started a treatment that's helping with that thank goodness.

I'm also soon seeing a rheumatologist for a possible Fibro diagnosis, as I have fairly severe widespread pain.  Guess I should mention I had knee surgery when I was younger (errupted cyst) and a tonsillectomy somewhere in there (from chronic tonsillitis).  I also have fibrocystic breast disease and have had 2 lumps removed to date and a few still in there that just get checked every now and then.

So, basically my day is wake up feeling like I got hit by a truck (you know, like that feeling after you haven't worked out in forever and do wayyy too much), have to pee at least 2-3 times during the night and tons during the day...am pretty much in pain most of the day and after sex and have about 5 specialists and a PT and PCP. 

I never thought my life would be like this right now...but it is what it is and I have my ups and downs...I just hop for more ups than downs :)  I hope I can offer my experiences to some of you and let you know you aren't a long and give detailed experiences with some of the treatments I've tried in case you're planning to try them.

I feel for all of you who go through this...you aren't alone and you're allowed to pity yourself sometimes...you're allowed to feel crappy.  Just try to realize you are never alone and that things will be up some days and down others and I wish you all pain free days and nights - and to try and keep your sanity through all of it :)