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!

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!

3 weeks to go....and I'm venting

Hey everyone....I've been a little crazy between the program and trying to do what I can for work.  Also, some big things with my little bro as I mentioned last time, he turned 18, graduated - AND proposed to his girlfriend of 3 years a week ago so it's just been nuts!

So I technically have 3 weeks of the program left, although it's not full time anymore because of the limited amount of PT visits I have.  I'm starting to get anxious about life after the program.  I think I looked at it as completely life-changing, which it has been, don't get me wrong - I've learned so much and feel that I've gained the acceptance I've needed....but even doing part-time work today I got scared of going back to my old life.  My relationship's on the rocks, I'm still in a lot of pain on and off (everything is flaring right now - I'm in a CFIDS flare, which led to a fibro flare - mostly the skin pain kind, and now a vulvodynia/vulvar vestibulitis flare, hemerrhoid flare, IBS, migraines, IC like crazy - EVERYTHING!) and the Savella still makes me a little naseous although I DO believe it's helping.

So as far as the Vulvar pain I'm *fingers crossed* getting an epidural in my pudendal nerve to see if that stops the pain.  I still get confused on how all of this myofascial pain works with the trigger points because sometimes I'll use the thera cane and massage and hit a spot on my butt that hurts in my vulva...it's just all so strange....sometimes I feel like this isn't my body. 

Anyway, sorry this more a venting post than a progress report because I'm just so exhausted both physically and mentally and emotionally and know that I'm depressed and it's a little difficult to deal with it all.  We all have those times and I'm still just trying to stay positive.  All that I've learned in the program has really helped me be able to cope and I'll have that with me forever.  The ways to deal with not only chronic pain, but the way people see me, how hard I am on myself, feeling depressed....every aspect of my life.  Sometimes you just need to vent.  If anyone reading this needs to vent feel free to comment or email me....sometimes it just makes you feel so good to get it off your chest.  Just admitting - even if it's on the computer that I know my pain, my relationship problems, my fear of going back to my "old life" and guilt I feel with my family right now - all of it is making me feel really depressed...and I'm ok with that because I know everyone is entitled to a slump...I also know I'll get out of it. Just one of those days....

Wishing all of you as many decreased pain days as possible and you have the right to have a pity party with yourself sometimes - don't feel guilty about it!  Just remember, that there's still so much out there that we can do and pull ourselves out of it..and we will :)

3 weeks into Chronic Pain Rehabilitation....

Well I guess they call in the "flare period" of the treatment.  I'm able to start isolating some problems and even though my breathing has gotton tons better - my relaxation especially muscle relaxation has greatly improved - and I'm able to catch myself tensing up which as we all know just continues the cycle - and my stretching (they measure the degrees of which you can stretch all of your muscles) has gotten better in every single area from head to feet!  This is really excited progress.  There's only 3 main things that have really been sucky - and the 3rd is just more annoying than sucky.

1. God Bless you all with SI Dysfunction.  For those of you who don't know, the SI or (Sacroilliac joint) dysfunction is wher those big bones we often refer to as our hips that are almost like a heart if you'd put them together, are held in tight to your sacrum ( the very bottom of your spine, including the tailbone).  The bands of tendons are so tight they aren't supposed to move very much but allow movement from side to side, etc.  Now, technically - for example - if you are reaching for something, you should turn your whole body towards it, but sometimes we all just reach over and grab what we want.  In my case, in the last 26 years, since Ive had so many pelvic, knee and abdominal problems I usually sit (almost all day at work) with my right leg crossed over my left and lean on my right buttock.  This has turned my whole pelvis into one that instead of being straight and my legs even, being the right side is tilted front, the left side is tilted back and the right side is down and left is up.  This makes me limp, and makes my right leg longer. So what happens is when I make a move a shouldn't do that illiac crest (you can think of the two pieces like an english muffin that just go together) seperates and moves from the sacrum causing tons of irritation and pain.  Even some of the back pain that I thought was my IC.  The good thing is, I'm getting mobilizations (or adjustments) from my physiatrist which really gets everything back in line - the bad news is it comes out really quickly.  Another good news is they teach you how you can tell if it's out (sometimes it hurts but it's just sore) and then how to fix it on your own!  However, this has been causing me such extensive pain that I feel it's pushing my progress backwards.  I did get one trigger point injection into a glute muscle that sent the feeling all the way around to where you feel SI pain which is a good sign, so I think its loosened things up but still hurts.  They said since for 26 years this is how my body thinks it's supposed to be, it could take a good 6 months or so to "rewire" myself.

2.  We all know that I have vulvodynia and vulvar vestibulitis problems.  I must say I've had some minor flare ups due to the excercise, but lately that big golf ball size pain is back on my right side.  The doctor did a trigger point injection in what's called my ischial tuberosity muscle and the first one (though I screamed and bit my arm which left a huge black and blue mark for the last 2 weeks - well come on 6 inch hollow needle down there???) anyways It jolted the pain right up along side the vulvar lips where I get tons of pain.  Its good to get the pain where it hurts because that means its traveling to the right spot.  This time he did it again and it traveled a little closer to where my leg meets the vulvar area...but its definitely helping with the muscle.  The only problem is I'm spasming down there like crazy and still having this crazy pain.  Back when I got my injections my GYN said she'd be willing to try a pudendal epidural since she does them for mothers all the time.  If she does this and the pain goes away that means its definitely the nerve and those muscles could be so tight they are entraping it....so we'll see.

3.  So I started on Savella.  It didn't give me the side effects it gives a lot of people like nausea, etc.but I think its starting to work.  I titrated up and now I'm at 50 mg twice a day and even though the mornings are still rough, when I get up in the middle of the night to pee its not as bad - and the morning may not be quite as tough.  I'm going to start titrating down some of the other meds - well that was the plan until  MY INSURANCE COMPANY DENIED ME - again!!!!!  This is what i went through with lyrica because I was trying to get it for my IC - which it ended up not helping much anyway.  But now I actually have the fibro diagnosis and they're STILL not approving this fibro treatment!!! Grrr - well I'm hoping they can straighten it out with the doc.

So on top of all that my hemerrhoid came back with a vengence and I have to go tomorrow and see if they are just going to take it off which I'm hoping for - of they'll have to put me down as my last doctor found it started deeper internally during my colonoscopy - so stressed out because A I don't want to be missing PT and B I have enough pain down there I dont want anymore!!! Especially with MY constipation problems - ouchie!!!!

Now I'm going to tell you about 2 amazing products.  The first is kinesio tape.  If you've been in PT you mave have used it but its helping a lot with my posture and releasing trigger points. The second is the best thing in the world and can officially replace a husband!  The brand n ame is Thera Cane.  This amazing little tool is like a mini can with balls on each end, then other small sticks that point out with balls on those too.  You use it to find trigger points anywhere on your body and massage them out yourself - it's sooo great that I went online and ordered one for myself at home.

I also started hynosis therapy last week which suprisingly gets me so relaxed but aware it's just an amazing thing!

So to close - that's where I am now and I'll know better tomorrow if I can go straight back or not.  Annnnnd big week because my brother just turned 18 over the weekend and then graduated last night - what a cutie!

Hope you are all doing well and I'm sending you all serenity, courage and wisdom....and also some peace in all of this craziness. <3

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 :)

I'm still alive....Days 2 - 5

Hey everyone! I am really sorry I haven't been on point with updating daily.  I moved into an apartment this weekend to really be able to focus and have alone time when I need it - to really give my all to this thing!  Then late Monday and yesterday I had a bit of a set back with a CFIDS flare up and small UTI.  I could feel it coming on Monday afternoon and slept allllll day Tuesday (which I didn't count towards the "days" I'm listing as I didn't go in) and alll last night.  Well seeing as how I don't sleep at night - let alone during the day - along with the migraine, severe fatigue (couldn't get out of bed) joing pain, muscle pain, blah blah blah the usual....I knew i got slammed but thankfully recovered enough to go back today!

So in any case I'm still increeeeedddiibbbly tired and fatigued because of the flare, but I've handwritten my experiences every day and will write about them soon so you can really get an idea of how amazing this program is.  The staff - ALL of them are the most amazing people - incredibly talented and smart in their respective fields and just so kind and generous.  I truly am feeling better already especially having started with all of the stretches and gradually adding.  The breathing has been key too!

In any case, I hope you are all well and staying POSITIVE....it's really hard to do sometimes...but it's the only thing that can keep us pushing forward.

<3

Day 1...and ME/CFS and FMS Awareness Day!!

Well - today was very interesting.  The staff at the location I am attending are all very friendly and enable you to be optimistic (as you can see from my reply to the comment yesterday, there are many of these programs so send me an email and I can either let you know of the few in my area or look to see if there are any near you - the biggest thing to look for is a physiatrist in your area which I go into a little more below).

In any case, it was my introduction day and needless to say I got lost and was about 10 minutes late...ooops!  They start sharply at 8 am with relaxation, but I had to go through the orientation anyways so I didn't get to take part in that yet. During this time, the PTA explained the goals of the program, the philosophy of treating chronic pain as opposed to isolated and specific pain and discussed the pain cycle, gave me background information on all the staff and available staff, and laid out the groundwork for the customized comprehensive treatment.

I started with the basics - and will continue with this for the rest of this week, then we'll move on to targeted problems.  So today, after orientation and paperwork, I was given a big book of stretches which is what I spent most of the day doing.  They are with you the entire time, so they are able to show you alternate ways to do the stretches if it hurts certain muscles, how to actually do it if you are performing the stretch incorrectly (as i was a few times), how to relax, breathe, even get up and down correctly (who even knew there was a specific way to do that?!).  The entire goal is to identify your pain level when you walk in - and make sure at no time you exceed that pain level...it would be great to go down, but never above when you walked through the door.  Of course that evening or next day I may be worse (as I'm feeling now), but I haven't done these activities in so long it's to be expected. 

Next we went into a room where everyone lays down with heat and/or ice and has a 15 minute breathing quiet period.  We do this twice a day - before lunch and before we leave - it's really awesome.  After lunch it was back to stretching until Biofeedback time!

This time I was able to really get a good view of how my breathing and every move I make is affecting my muscles and tension.  I got it down a lot lower than the evaluation so I was happy!  Then back to more stretching and aside from a few breaks and that last quiet breathing time, that was it. 

Although I'm sore now, it felt really empowering to have some sense of control over my relaxation and feel myself feel a little better (not from my meds, but from me - even if it was a short period of time!).  Now tomorrow I meet with the actual Doctor (a Physiatrist) who manages the program so we'll see how that goes.  Here's an important Doctor for those of you looking for a similar program - a Phsyiatrist works on pain as a whole and often works with a variety of doctors, pt's etc...so even if there isn't a program like this in your area - if you can locate a good physiatrist, they will likely be able to construct something similar for you!

Ok anywho - they also do the whole team evaluations on Thursday - although since I'll have only been there a day, mine will be short - but usually during this time they evaluate your progress with the whole staff team in the room (from the PT's to the psychologist to the nurse and doctors, etc.).  How awesome is that to get comprehensive feedback??!  I'm excited to really have this done next week! 

So I'll keep you posted on how the big doctor visit goes tomorrow and hopefully next week we'll start getting into some specifics!  I'm happy to provide more detail to anyone who would like to email me!

Finally - today is the 18th Annual International Awareness day for ME/CFS and FMS!  Remember your Blue ribbon for ME/CFS and your purple ribbon for FMS!  IF you can, try to take part in any activities that may surround today, including a few petitions out there for each disease that have really great causes.  Also, reach out to your ME/CFS and FMS friends today...a little love goes a long way and let them know you're thinking about them - I am sure thinking of all of you and hoping and praying that you find moments, no matter how big or small, during your days where you have relief and are able to smile, giggle, laugh, and see past the pain to enjoy the wonderful things that make us want to fight these diseases - because there are so many reasons.  Bless you all!

30 days to the new old me...

So, I haven't been on in a while and soo much has been going on. I promised I'd write about this chronic pain rehabilitation program when I knew more - and although I don't know everything, I have been accepted and begin treatment tomorrow!  I was really unsure at first but this program is 4-6 weeks, about 7 hours a day (so I had to take medical leave from work) and it's all encompassing.  There is a lot of physical therapy, a nutritionist, a cognitive behavioral therapist, a biofeedback specialist, nurses, a nutritionist (which is major important with my vulvodynia, IC and Ulcer diets all conflicting!!!) doctors, etc.  They meet and discuss the case as a team and work together to get me to feeling better!

I originally had the consultation/evaluation and had to do a bunch of written work and questionnaires.  Then I had my physical therapy evaluation where I found out I have a lot more problems than I thought! I have tennis elbow, golfers elbow, an SI problem, a tilted pelvis, knee problems, scapular problems, severe neck and shoulder problems, etc.  I also have a huge muscle tension problem and myofascial pain syndrome.  So - the good news is they can treat all of these things!  Through the intensive PT - I'll be able to reduce my pain; through the biofeedback I'll learn relaxation techniques, the correct breathing methods and ways to bring my tension down; through the counseling I'll learn how to cope - and there is a huge success rate!

So in any case, the first 2 weeks are the most intensive and will most likely cause the most pain - so I don't know that I'll write every day - but I really plan to relay the progress as much as possible.  This comprehensive program is so exciting and I am so hopeful that it will help me - and eventually help others.  I'll never be the old me again...and I'll never be a whole new cured person....but once I reduce my pain and learn how to deal with it better...I'll be the new old me.

Headache and Achey Body/Skin Help!

* Note - please speak with your doctor before trying ANY new treatment - even as natural as essential oils as some of them may interact with medications or be too strong for your condition or skin and cause problems.  Also be sure to educate yourselves of the combinations and types that you may choose to purchase.

So I know I owe a little more of an explaination about the pain rehab clinic I am being evaluated for, but I figured I'd wait until I'm actually evaluated so I can tell what's really going on.  I just can't believe it's already coming up the end of the week.  I feel like I have so much prep to do as far as making sure I have a complete list of EVERYTHING that has to do with my problems.

And as I'm sure you can see - I did it - officially changed the name of the blog to Chronic Pain Won't Win...because now, it's just everywhere!

Anywho, I know you can tell from my last post I'm really trying to keep positive about everything.  So lately I've been trying to take some healing into my own hands and keep that positive energy flowing. I know that's part of my upcoming treatment as well. My physical therapist for my pfd gave me some stretches to try and said some gentle yoga could help.  My problem is (and it's partieally fear because of what I know) that with Fibro - you should get up and move to keep going so you don't get stiff.  But with CFIDS, if you do even an ounce too much on the wrong day, you could be in bed all day the next day.  I'm losing muscle tone yet I'm nervous of what to do.  In any case, if I get into this program hopefully I'll get a little more direction.

In any case, I'm sure those of you with any of these diseases can relate - but there are days when I wake up that I can't move, or the pain wakes me up and I almost yell in pain.  Then there's just days where my skin hurts so bad I can't even where clothes.  Then headaches that just won't go away....Those are the days I can't go in to work, because obviously if I can't wear a shirt I can't be in the office.  Luckily I can work from home, but I'm hoping my boss and others don't get too upset about me doing this.  I don't know.  Once I get things figured out with this program, I'll know more about what I can and can't do.

So, that day I spent with my mom we went to a nature/organic health type store.  I've been reading a lot about things you can do like biofeedback (mentally training yourself to do things like calm down, visualize, etc.), essential oils, yoga, etc.

So now to the title of the post.  I've really found some help this past week - it's been a rough one.  First and foremost - the headaches that are so pain ful - sometimes I will take excedrine for the pain - sometimes when its turning into a migraine I either use migraine medicine or pain meds.  But lately I've gotten lavender.  I massage it on my temples and right under my nose right when the headaches start and it starts to go away.  So if I can prevent it then I don't even need any medicine!

Also - my joints and muscles and skin have been painful - so I made my own massage oil.  I have made 2 different ones so far - and I'm not sure which is working better.  The recipe for the latest one I made is a quarter cup of Jojoba oil (as a carrier oil), 1 drop of rose, 6 drops of petigrain, 5 drops of sweet marjoram and 3 drops of frankincense.  There are so many different recipes to try though for so many different things!  I've been breaking out in painful acne on my face and shoulders lately - obviously it hurts so much worse than it used to and putting either lavender or eucalyptus on it has stopped the pain right away....the lavender has a tendency to dry so it gets rid of them quickly but I try not to use too much.

So, you may see me posting some recipes on here....since I'm sensitive to so many things, I'd love to try my hand at making my own lotion and mists and things like that too.  I know there is a spray you can spray your face with to give you a boost while driving or in the afternoon - which I usually need since I get so little sleep most of the time.  Anyway, that's my latest attempt to take my pain into my own hands and hopefully it will continue to help - or at least continue giving myself some positive thinking and a way to take my mind off of things.

I just found out today that my little brother (and my little, I mean 17 years old, 6'1", and 185 lbs (of muslce - he works in a gym) - BUT 8 years younger than me :) ) has Scheuermann’s disease.  Originally we just thought he pulled a muscle or pinched a nerve while lifting, but after several weeks of pain, with nothing making it better- even after PT - he finally got an MRI and initially they thought it was a bulging disc pushing on his spinal cord which was causing nerve pain - then they looked closer and saw it was more than just that and he has this disease.  I don't know much about it yet, except it doesn't sound good and eventually he will probably have to have surgery.  I'm going to do some research, but he gets his first Epidural on Monday so I'm hoping it takes him out of the pain.  I'd give anything for it to be me...he's about to be 18, graduate in a month and a half - have his senior prom and start college - I don't want him dealing with this or going through surgeries and problems like I had to in college.  He's really strong and a great kid (or guy - sorry can't help it) though so I think he'll be ok.  I really feel bad for my parents because I know this is soo hard on them.  They already had to worry about me and now him...so my goal is to be at my best around them...I can't lie because I'm an aweful liar - can see it on my face....but just be at my best.

Alrighty well I'll keep you posted on the program and hope you all have a wonderful and pain free (or a few notches less at least) day!

May the Best of Your Todays Be the Worst of Your Tomorrows....

So, I have to admit - when I finally wrote the post about my diagnosis - I didn't think it would turn out like this.  I thought I'd get overwhelmed...I thought I'd be down...but I'm in a good mood, so I'm glad I'm writing it now.

Ok so to start - I must say...I love me some Jay-Z...well I love every type of music ever created...just depends on my mood. Music is so awesome - can lift your mood, calm you down, make you have fun - and change your thinking.  Except, sorry, I don't really care for the screamo stuff my brother listens to because honestly it freaks me out (no offense to those who like it!!).  Sooo anyway, the whole point of that is I was up at 4 am again this morning (this whole not being able to sleep thing is really annoying) and saw the video for Jay-Z's Young Forever - and he starts with the quote that's the title of this post.  How awesome is that quote?  For the best things that happen today be the worst tomorrow...how wonderful :)

So I also must admit...today I felt a little better than I have been.  I know what I have for sure now (which I'll talk about in a bit) but even though it's kinda scary...I know...and I can't control what happens to me all the time...but I still control me and what I do about it and how I feel about it.  I just spent the day with my mom - and it's the best day I've had in a really long time.  We have always been the best of friends but we really connected about a lot of the things I've kept inside so she wouldn't worry and realized that she's gone through some of these things too.  Basically, we've known for a while that she has Interstitial Cystitis, but where my symptoms are mostly extreme pain...hers are more frequency.  I also believe she has mild fibromyalgia and since she has Bells Palsy, she already has a history of neuralgia.  We went to the most beautiful little Health and Nature store and I got a few essential oils and fun little natural things.  Then we made a few little massage oils and bath drops with some champagne and my dad grilled for dinner and it was the first time my mom, dad, brother and I (just the 4 of us) had a whole dinner together in forever.  It was so great.

Today gave me hope that I'll have more great days...and my attitude and the people I love have a lot to do with it.  So the last post stated my so/so appointment with the pain doctor.  After which I finally got the results to my tests and had some procedures run, symptoms recorded, physical tests and was officially diagnosed with Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - not going to go into all of the symptoms and problems it creates/has created in this post, but eventually.  So, anyway, its a double edge sword - finally getting a diagnosis.  I went through this before with each of my surgeries and especially the IC (which I knew had no "cure" as these don't either)...so it wasn't quite as shocking...especially since I had a suspicion already.  I really didn't think about it for a while and just focused on other things.  My doctor is really hopeful about this outpatient rehab program that the pain doctor recommended me for and my first visit is in a few weeks and will last at least 6 hours the first day.  It's a little bit of everything and gives me hope that I can at least try something.  I told my Pelvic Floor Therapist at my last appointment for a while this past week and she agreed that it sounded great.

In any case, there's up and down days...days with tremendous stiffness and weakness, days where my skin can't even be touched by my hair let alone wear clothing, days where my joints hurt, days when I can't get out of bed and even the thought of going to pee makes me tired, and days where - although it hurts- I can still have a great day...and those are the days that are filled with love...of friends, family, my boyfriend - those are the good days.  So I may not be happy every day....but I'm happy today.  And like my mom said to me today...this has happend to me for a reason.  A) I can handle it...I'm strong; and B) because it was meant to happen to me...there's always a reason and whatever that is...I will find out :)  I won't let this consume me...even if I'm in pain for the rest of my life (although, knock on wood I do hope that's not the case :) )
...it could ALWAYS be worse...and I can still have happy, wonderful days like today...and I will live for those - and know I'm really lucky.

"I'm sorry...there's nothing I can do for you..."

So how many times have we heard doctor's say this?  Or the variations like, "well you're already on XYZ medications", "Oh, I see you've already tried the things i could do for you", or my personal favorite "Well you've tried everything already - there's really nothing left".  So I don't know why I was so shocked and broke down when the title of this post came out of my Pain Specialists mouth on my first appointment today.  I started crying - and felt soo embarassed!!! I know I shouldn't be but it's so hard to hear those things...no matter how often you've heard it before.  You get your hopes up that this time it will be different and there will be something that can work.  I really respect him as he said he doesn't want to put me through a bunch of things that will just frustrate me and not work because my pain is so diffuse - I even thanked him as there are way too many doctors who just poke and prod you to try anything and he didn't give me false hope - well he didn't give me any - but that's besides the point.  He said he'd always be available on an as needed basis or for med suggestions, but as a pain specialist...there's nothing he can do.

So it's back to square one.  Aside from the fact he agrees he feels I have fibro and offered a comprehensive Rehab program...I just try to move on with life.  Day by day....one step at a time....holding on to whatever I can to keep my life and keep my happy :)

When it rains, it pours.....and I think I'm drowning.

So, it looks like the name of my blog will soon be changed to just Chronic Pain...maybe  "Guess the disease or condition???".  So many of us go through this when trying to be diagnosed with whatever it is we have...which may be more than one thing.  Currently, I've felt like I've been getting worse and worse and every time there's a glimpse of feeling better - something else happens.  I've been really sick since January...first was a cold, that turned into a sinus infection so went on Augmentin which doesn't like my bladder but I stuck through it.  Things got a little better but stayed exhausted and sinuses hurt and the headaches were bad.  Then my WBC's were through the roof and I had every indiciation of a uti - probably kidney infection - went on Levaquin...didn't get better.  Then had TONS to do at work and just wore myself down...so I knew when the last proposal was in I needed to go back to the doctor...extremem flank pain, my urethra HATED me...pelvic pain, blood in the urine, fevers the works!  So she said the WBC's were extremely high - put me on Macrobid & tramadol and told me to call back for the culture.  When I called back they said mixed flora - so not really a high indicator of infection but I was in so much pain it was work to get out of bed and EVERYTHING hurt sooo bad...especially that darn right kidney!

When I was at my urologist I broke down - which I don't usually do - but the pain and exhaustion was consuming me...even with the pain meds I was on.  This is when she called the director of the pain clinic and he recommended Tramadol and a visit to see him soon.  So I finally gave in and scheduled a pain management appointment.  My PCP is against them as she gives me everything I could need...but they don't prescribe medicine, just recommend it and do trigger point therapy etc.  Since I have so many problems with Ulcers, my Liver, nausea and  IC, etc.  it's going to take someone who knows what they're talking about and since he's the Director and has been on TV a lot (not that that means anything) I'm feeling good about it....and then he'll just recommend things to my PCP so her and I can manage it.  I'm in soooo much pain but I'm very scared about becoming tolerant at my age (26) too soon.  I was born tolerant and never responded to things like Tylenol 3 or 1 regular Vicodin.  I just need something to have down the road...and don't want it to be too devastating when i get off meds when/if *fingers crossed* I get pregnant.  Anywho, my urologists exact words to the pain specialist was "she's a really good girl and i've been seeing her a while and well, she's just spiraling down hill really fast and I hate to see her like this...this is bigger than IC - it's everywhere".  Greeeattt.

Anyway, the tramadol was awesome for the all over pain.  But not for my really bad pelvic and lower back pain.  So anyway,  my "sinus infection" got way worse and i was living with migraines everyday....excruciating body pain...insomnia...and crazy fatigue.  It's affecting life, my job, my ability to work on my house, my family, my boyfriend, my sanity - everything!  So anyways went back and was treated again for a sinus infection with Augmentin and once I didn't get better I went back...my nasal cavities were swollen and bloody and the headaches excrutiating.  She gave me a Kenalog shot on the spot and is 90% sure I have fibromyalgia as every trigger point sent me threw the roof.  So, she set up a series of every virus and autoimmune disease and lyme, etc. she could think of.  Meanwhile, I threw my hip out, my great aunt passed away - and I decided to be a genious and get a shiatsu massage chair.  IT felt soooo good but the next day (around 4 am) I woke up at 4 am and was in sooo much pain.  I swore if I looked in the mirror my entire back would be bruised.  Only part of it was but it was so bad I had to take my shirts off and couldn't even have my hair touch my back.  so it was working from home half naked all day and I could finally wear clothes 2 days later.  I couldn't get the blood work right away because of the steroid shot, but I got it last Thursday so I had to wait out the weekend.  Needless to say I had a 6 hour panic attack Sunday night.  Not horrendous but felt like I was crawling out of my skin, chest was tight, uncomfortable and couldn't calm down.  After about 3-4 hours I realized what was going on and took some valium and melatonin to sleep (I have been sleeping only 2-4 hours a night for almost 3 weeks now until i started the melatonin).  Still on and off, but anyways.

So it was really strange....my doctor's nurse called and said the only thing that showed up in my blood work was chronic fatigue.  But there isn't a test for chronic fatigue and I tried to ask her a bunch of questions but she didn't want to talk about it until I meet with the doc. to explain it next Tuesday grrrrrrrr.  So my guess is I do have Fibromyalgia and potentially Chronic Fatigue Syndrome...but at least I have answers.  I'm slightly discouraged as I've tried Gabapentin and Lyrica and both didn't work.  She started me on Celexa so I'm hoping it works a little....the amitryptiline made me feel like I was drunk until 1 pm!!!  In the meantime I haven't been using the Clobesatol ointment on my vulva so that spiked up again grrr...but my friend Alex has been very helpful at keeping me sane.  I can't wait til I figure out what this is so I can make a case study on her site (listed on the right - Vulvar Vestibulitis Relief).

So, anyway - I picked up all my radiology work to take to the pain specialist friday and found out i have "multiple stones" in my left kidney - here I thought I passed the only one i had!!!!! So they're deep in there but makes me nervous that there's more. 

I guess the moral is it just feels like one thing after another and I'm sooooo exhausted all the time...then I get really hot and feel like I'm going to pass out even when I do the smallest things!!!  I'm glad I'll have a "diagnosis" and can work on what to do from there...but I'm not looking forward to this pain...it's a scary thing, but it could always be worse.  I'm blessed to still have what I have and the support that I do - I feel soooo deeply for those who are going through this without support...I can't imagine - bless you.

Well i'll keep you posted as to how it goes..... and wish you all a pain free and peacefull night of sleep tonight :)

Vaginismus on Dr. Oz!

So I just wanted to put this out there to folks who have any type of Pelvic Floor Dysfunction problem - even if it isn't Vulvodynia or Vulvar Vestibulitis or Vaginismus (as Dr. Oz is referring to as "Vaginal Panic Attacks" - and I don't really know why...but anyway).

I saw this episode the other day and they finally got it up on the site and I got soooooo excited because it's the EXACT same type of electronic biofeedback device I just started using in Physical Therapy!  My first time through PT (which I'll explain a little later when I talk about PFD) she used the external electrodes that you see Dr. Oz put on the woman's arm.  She placed one right next to my vaginal opening and one on my abdomen as a control.  This time around, since I've been diagnosed with VV as well, I got the "little penis" as I like to call it - which is the little white insertable electrode you can see in this Dr. Oz clip.  Then the program Dr. Oz shows is the EXACT one I use too, so I just got really excited!

I do the biofeedback both laying and standing so I (and my PT) can see the difference.  The internal probe has been a much better tool as it gets right next to the muscles internally that spasm....although when I hold for a long time I start to get incredible pain against my coccyx bone (feel like the muscles are being pulled right off!) but afterwards it hurts internally - so its sooo weird how pain can trigger in different areas.

Another benefit of the internal probe is that you can also hook it up to a little machine (kind of looks like my Tens unit, but more like an electric heat control box - the ones with a knob you turn up for more heat and down for less you know?)  Anywho, she hooks it up to this and I can either use it for frequency or pain...it then acts similar to my tens unit sending electronic impulses inside to help calm the muscles.  I personally know that I am constantly contracting my muscles down there - especially on my right side, so having started biofeedback has made me think much more often throughout the day that I need to calm down and relax and take a few deep breaths and stretch.

The second video I found yesterday was Melody Thomas Scott (who plays Nikki Newman on the soap opera The Young and the Restless - my mom was obsessed so I learned to love it :) )  - well as a lot of you with IC know, she has IC and has been in remission for a while and is a huge advocate - I love having celebrity advocates for these diseases as for some reason it seems to make it "Real" to folks who don't understand it.  I don't know how many celebrities would come out and say "Hey I have a problem with my vagina and it hurts when I have sex!!!", but hey...the attention really helps the cause.  So this video talked a little about IC and her experience with it - noting that it is incredibly painful and serious.  I can't find it today but will upload it as soon as I can!

Anyway, I just always get so excited when I see these things on TV, to bring attention to what we go through, so here is the Dr. Oz Link:

http://www.doctoroz.com/videos/vaginal-panic-attacks

Vulvar Vestibulitis

So I'm going a little out of order here and will get back to where I am with my IC treatment as well as PFD, etc. but I had my second treatment Tuesday for my Vulvar Vestibulitis so I felt like it was a good time to talk about it.  And sorry in advance because this is going to be a reaaaallly long post - but it's my entire treatment for Vulvar Vestibulitis.

This is actually an important post for me, because it's the reason I started blogging about my experiences in the first place.  Not BECAUSE of the VV or the injections, but because when I found out I had to have injections down there...as you'll read - I freaked!  So I did what I always do - looked anywhere and everywhere online to find something about these injections.  That's when I came upon Tamra's blog (Living with Vulvar Vestibulitis - linked on the right).  Although her treatment was different then mine, I felt soooo much better reading about a personal experience of someone who had actually had shots in their vagina! I never knew that happened and she had done it and documented it and shared it.  I couldn't believe how much anxiety it relieved just hearing her story and that - even if it hurt - it was ok...just another treatment.  And it wasn't some medical explanation...it was a real person, telling a real experience.  That made me think - even if our stories aren't the same...I should be sharing mine, so that one person can read what I go through and know they aren't alone and see what I've tried.  Something that works for me, may not work for someone else and vice-versa...but it gave me a sense of comfort, so that's why I started - and I have Tamra  to thank for that :)

So now, back to my story - for those of you who don't know -  we are talking about all sorts of pain in the "va jay jay" (my dad can't handle me running around saying "vagina" so this he can handle, haha ).  I have generalized vulvodynia as well as vulvar vestibulitis. 

Vulvodynia is chronic pain in the vulvar area.  For some people it's very localized, and others its just everywhere.  We have to be careful with soaps and the acid in our urine and exercise and wearing pants...just about everything.  This all came to light immediately following my last surgery in October 2009 (although the symptoms - I just didn't know they were symptoms - I had for years before).  I was getting a lot of pain and discomfort down there.  I started to get periodic bouts of extreme sharp pain (more on my right side - which may or may not be part of this), and started to  become much more aware of burning and pain when I wore tighter pants, crossed  my legs, sat a lot, having underwear rub against me, wiping after the bathroom - anything and everything was just so painful.  And sex - although my serious boyfriend of 3 years and I are GREAT together (not bragging, just lucky :) ) - started to really hurt more than normal (I say "more than normal because I always thought I guess this is how it is - it just hurts! until my mom - who I'm obviously very close with since I had this conversation with her - told me its not supposed to hurt!)  Upon penetration it always hurts and afterwards I feel like he was wearing a sandpaper condom!  So, in any case it got worse and worse until I brought it up with one of my Urologists at UPenn as well as my uro at Hershey Med - both were convinced I had vulvodynia - and both offering up "the best of the best" for me to see to have it treated.

Well I looove my gyno - she's so caring and just awesome and so I thought, you know what...I'd just like to see her first to see if she even heard of it!  So I set up my appointment (which was about 3 months out of course) and waited.  In the meantime, I went without underwear when I could and had lidocaine ointment left over from a really bad hemherroid so I used that down there which really helped.  So the moment of truth came and she took one look and said I was horribly red and irritated.  I told her it basically took a muscle relaxer and vicodin in order for me to sleep after sex.  I'm one of the lucky ones who can still enjoy sex - as a lot of women have just given up as its too painful (and that makes me very sad for them and their husbands, so I really hope my talking about this can help at least someone with some options - no one should have to live without intimacy with their partner)....but this was getting out of control fast.  I told my gyno what my doctors thought and she said, although she was sureI had vulvodynia all over because of the drastic redness and swelling among other symptoms  (mine's worse on the right side), she wanted to do the "qtip test" for something called Vulvar Vestibulitis.

For those of you who don't know specifically about Vulvar Vestibulitis - I found out really fast in that appointment, so I'll tell you that it's more localized to the entrance to the vagina...inflammation of the glands right inside the vaginal opening. So my doctor performed something called the "qtip test" where she pressed on different areas with a qtip and asked for my reaction.  Well just about everywhere she touched with that darn thing sent me through the roof - It just burned sooo bad (hence the sandpaper feeling!!!!).  So her options were treatment with Valium and Elavil (Elavil I tried and made me too out of it...like I'm not enough already!  And I was already on Valium which was good).  She also started me on a steroidal ointment called Clobetasol Propionate for the specific opening and other areas that were irritated, starting off with more applications and slowing down to once a day if needed.  She also wanted to start me on a series of injections - YES - whatever you're thinking - that's where the needle goes!  The way she did it was to use lidocaine and Kenalogg (a steroid) and do a set of injections, then wait 6 weeks and do another set and then see how I feel and possibly do a third.

So down to my specific experience with the treatment. Needless to say I was a nervous wreck because who wants needles down THERE when they are in constant pain - let alone, um....EVER!! And let me tell you, I've been through over 5 surgeries and kidney stones and I think I was most scared of this, haha. Luckily, I have my wonderful b/f who went with me as I wasn't sure how driving home would be and I took some of my valium and a pain pill ahead of time - so he was my chauffer.  Before she started, she actually showed him the areas and he could see the inflamed spots that were the worst - he actually commented they were on the side that shoots me through the roof in physical therapy, which I'll get into more in my PFD posts. But it's definitely something to think about - how all this stuff is related.

So I don't want to say it wasn't so bad - because the first few shots hurt but weren't horrible...but the last two (in my most sensitive areas) were really bad.  I'll leave it at that because it was a lot of pain.  My boyfriend held my head (as I was affraid I'd break his hand :) ) and he said I shook horribly, espeically on those last two and moaned a little, but she kept asking if I was ok throughout it. After the injections were over she rubbed in the areas externally and internally very quickly. All together it was about 30 seconds and *poof* it's done. Not like a kidney stone that goes on for hours...its done. I bled for a little while, and was shakey and just had to go through a little emotional period and stuck a pad on and was out of there. I did feel a little like I got punched down there the first 2 days after or so- but that's how I usually feel after I get a shot into muscle.  It was however, incredibly bruised, which I think is normal considering all the nerve endings.  A few days after I was already feeling less burning and at my PT visit a week later we noticed my pelvic floor muslces had calmed down a bit and I still didn't have a lot of sensation on the right side (we think that was the lidocaine).

So that was the first time.  My second round was Tuesday and needless to say I was SOOOO nervous before - verge of freaking because I kept thinking about those last 2 shots. I should mention, on top of having these done, in the past 2 weeks I've had what they think was a kidney infection, sinus infection and the flu all at once so I wasn't feeling great as it was, but she said if I was up for it she would still do it - and I just wanted to get it over with! So I did the same prep as last time - Valium and pain pill and I also did feel a little confident that I was feeling better and told the doctor when she came in. She did the qtip test again just to map out the problem area and noticed dramatic improvement and my painful area had really shrunk. She didn't even need to use the full dose of the injection! There were still 2 areas that were really painful (more of an intense burning feeling) when she touched - which were those on the right and left that were bad the first time - but the whole experience was better than the first. It was still pretty painful but not nearly as bad as the first time at all!

So far the recovery is better than last time too - not quite as sore and after having my boyfriend inspect (really how romantic is that - spread eagle with him checking out the bruising...hot, I know haha) he said that the bruising was definitely there but not as wide spread as before, it kind of yellowed up my vulvar lips before, but not this time, just that immediate area.

So as of now, she thinks that will be it and I can continue the clobestal ointment in the broader area if need be. I am hoping I don't have to go back for number 3 but she said it was up to me and how I feel. I guess I should note that sex hasn't been as regular lately between me being sick, my boyfriend being sick and each of us traveling for work, so once I get back to more regular sex I think that will determine how this thing is going to pan out...hopefully it's less painful!

So that's it - that's my personal experience with the injections and although it sounds painful and scary (sorry I didn't want to hold back!!)- it has been incredibly worth it!  I have some friends who have had them done with natural supplements such as Traumeel as well as allergy meds such as chromolyn and been helpful. I've also known folks who have had weekly injections. I have other friends who have gone more of the naturopathic route with coconut oil and traumeel creams as well as seeing naturopaths for full body treatments and have been feeling better.  This is just my personal experience and I know folks it hasn't worked for...I just wanted to share what I went through.

With Vulvodynia and Vulvar Vestibulitis it's really a lifestyle change; soaps, tight clothes, creams, lotions, pads, underwear, medications, supplements, vitamins, foods, sex - all of this stuff can really effect us.  I just hope this continues to help and keep getting better.  For anyone going through this or considering it, feel free to email me with any questions :)

Let's Talk about Interstitial Cystitis....Part 1

So, who knows the who/what/when/where and how's of my chronic pain...although I can make my guesses, but if the doctor's don't even know...well then I sure don't!  All I know is what I've been through, go through every day and will go through.  And I know I'm trying my darndest to not let it scare me about the future and live a great life (which sometimes may include things that aren't so great for my pain levels...but hey - I am going go live a great life!).
So I figured I'd focus this post on explaining the diagnosis that "kind of" started it all.  I say "kind of" because, if you read my first post I had some problems before that including an adrenalectomy that was somewhat crushing my kidney so maybe that started it all - who knows, that caused me tons of pain for a long time and they thought it attributed to some of my earlier UTI's.  In any case, after my adrenalectomy I prayed I would be better, so in my first post you'll notice my mention this random pain in my right kidney upon urination - the first time it happened after surgery I bawled.   Then came another "UTI" that again showed no infection and was continually in pain, I cried....and cried....and cried.  I mentioned back in 2005 I had a cystoscopy with hydrodistention that came back fairly normal. 

Well things finally hit a wall in the Late Winter/Spring of 2007.  I was at work and had been feeling crappy but what else was new.  Well this particular day I was week and in a lot of pain...I went to the bathroom and when I went to pee felt sooooooo much pain in my urethra I almost screamed....looked down and just saw lots of blood.  This had never happened to me before so here I thought maybe I was passing a kidney stone ( I knew I had one lodged up there from a previous CT scan).  So I went and told my boss as I was shaking and one of the managers drove me to the hospital down the street from where I worked where my dad and boyfriend met me.  I gave a urine sample but was in so much pain and they told me it could still be a few hours before I saw anyone...so we made the decision to move to the ER near my house.  Long story short - turned out to be a horrible kidney infection, they got the results back and it was full of blood and puss (ugh i just hate that word) so they put me on antibiotics as well as an IV antibiotics and gave me some pain medicine and sent me on my way.  Finished the antibiotics and started to feel better until about a month later I ended up back in the ER with the same doctor after I had that huge pain in my side while trying to pee and lots of blood again.  Turned out to be the same kidney infection - just that the first time the 2nd set of antibiotics didn't get it...so they gave me another IV dose and sent me home with another antibiotic.  He said if this one didn't clear it up theyd have to admit me as there was no other pill form they could give me to combat it.  This time, it worked...hey- maybe this was really the beginning of it all who knows.

So moving along, this is officially where the  IC story starts.  After another series of "UTI's" that showed high WBC but not bacteria I was sent to the urologist again who decided he needed to run some more tests, after a few tests (like having me use the bathroom and measuring how fast it came out - mine was very slow and in spurts - starts and stops, and then checking and seeing I wasn't fully emptying my bladder, and pain upon internal examination) in October of 2007 I had THE cystoscopy with hydro that showed it all. 

I remember exactly when it was because my boyfriend and I had been dating almost a  year.  My company had a retreat in Vegas - VEGAS! The first time my boyfriend and I had ever been and BOY did we live it up.  I had to work part of the time but we got into the hottest clubs and stayed at some amazing places and spent a day on doonbuggies - just amazing.  Of course- aside from this growing bladder pain (and my thinking I had a UTI) - my hemheroid problem emerged the Friday night of our trip (we left Sunday morning) so I spent all night that night in and out of a bathtub - all the usuals - preperation H, etc. were doing nothing.  Luckily I had brought along some pain  medicine I had saved over from a procedure...and man.  Try going to a club til 4 am, dancing your butt off then walking the strip - then the flight home??? Forget it - I literally laid across my bf the entire time.  Finally got home and got a prescription steroid ointment that made it go away in a day.  But the bladder pain was still there even though i'd finished my meds.

Anyways sorry for the tangent, this is all so clear to me because that was the end of September and the first week of October was this cystoscopy w/hydrodistention.  I was so nervous this time because my symptoms were much worse.  The first time in 2005 was more because of the issues with what we later found out was my adrenal gland and I wasn't having many problems with my bladder.  But this time I was in constant pain!  So my dad took me and the doctor talked to him while I was coming too.  The doc. had another one right after so I woudlnt see him until my follow up appointment but I could tell by the look on my dad's face it wasn't good. 

He told him the doctor said my bladder was incredibly small - and had shrunk fairly fast as the last time it was on the small side, but not bad and in only 2 years it had really tightened up.  Then he showed him the pictures...glomerulations everywhere, bright red everywhere, swollen, irritated, just horrible - he said it was one of the worst cases he'd seen but thank god there weren't any Hunners Ulcers (which sort of suprised me because I have ulcers everywhere else, stomach, mouth, possibly intestines, so why not? - but thank god!).  At this point, he flat out diagnosed me with pretty severe IC and I was set for my follow up visit. I was scared and had no idea what to think or do as I had no clue what this was.  I was just out of undergrad but now had a full time job and was in my 2nd year of grad school.  I was tired all the time and in so much pain by the end of the work day, half the time I cried as soon as I got out of work, wiped my eyes, went and sat through class, and cried the whole way home.  So I researched as much as I could...found the IC network, found out about the diet and went back to my appointment hoping for a plan.  The hydrodistention caused me SOOO much pain this time and made things 50 times worse - I was ok for about 2 weeks and then in a flare for about 3 months!  All they would tell me was "it's normal and you'll start to feel better".

In any case I went to the appointment where the doctor basically reinforced what he told my dad and said that he knew I was in pain now but eventually the hydro should help and i probably knew more about the diet than he did and sent me on my way with only a followup with his PA.  I was devestated as I was in soooo much pain!  Needless to say I went to the follow up and she didn't have anything else to offer.

Now - this is the point i went back to my PCP and switched urologists.  I do want to make the point that this was the urologist that found my adrenal problem and sent me to the best doctor internationally to have my procedure and did diagnose me - from what I've heard he's really researched IC and is much better now - has patients he's treating that really love him so hopefully that's the case.  Moving along my PCP whos actually a PA-C but owns and runs the entire Doctor's office where I go and is very protective over me - basically i bring her research and she'll let me try things - is very supportive of whatever I want to do and wherever I want to go.  She is so amazing.  In any case, she sent me to the IC person in my area who happens to work for a huge University Medical Center in a huge Urologist Office but is a CRNP.  If you have IC and you're going there - you don't even see a urologist - you see her as she's studied straight from Dr. Moldwin.  She's technically still my urologist - but I've almost reached an ending point as far as treatment with her...which I'll get to.

So anywho I was very nervous for this appointment also.  I took all my files and the big seller was the pictures from the hydro - she said right away it was horrible.  And asked what he had prescribed me to start trying to help.  When I said "nothing" he said the hydro should start to work and he'd see me in 6 months.  She was appalled.  So she said she'd start me on the usual intro drugs - not all at once but Elmiron, Elavil and Hydroxizine and see where that got me.  She also added Baclofen to calm the bladder muscle.  Upon the internal exam I about jumped through the roof - this is when I was officially diagnosed with pelvic Floor Dysfunction (PFD).  She said I was off the charts and everything was off....she could feel it externally AND internally.  So she sent me to a woman who treated patients with IC and especially PFD and wanted me to start Physical Therapy Immediately.  I'll get to PFD in my next post as that has been the real trigger in all of my pain throughout these last 4 - 5 years.

So back to my IC, I tried, really tried these treatments but the Elavil made me a zombie at work until at least 2 in the afternoon.  I've since tried again with a combination of new drugs and while it helped a little - it made me feel horrible - quick sand...and I stayed on it this time much longer and that never wore off.  If I'm really bad or really can't sleep I may take one now and then...but it just wasn't for me.

As for the hydroxizine - I have no idea why but at first it helped with me sleeping and I don't really know the effect on the IC, but randomly I would wake up around 3 am and feel like I was going to climb out of my skin - it was only when I took the hydroxizine so I had to stop.  I continued the Elavil, started Physical therapy (which at first just caused more and more pain) and then she put me on neurontin to try...which didn't do anything at all.  This was all in the beggining to mid 2008.  All this time I was just in constant pain...trying to struggle through school and work and had another kidney infection in the meantime. 

Finally I called in an emergency to her office telling her I was at work and in a huge flare and couldn't take it anymore.  This is when she tried the first rescue instillation.  It was at this point that I realized how bad my urethra was...so tender red and swollen...Just completely irritated she used a lot of lidocaine!  After that treatment I felt better! I smiled and was soooo excited!  Until about 2 hours later when it wore off and I was back to where I started.  The next week the same thing happened and I didnt continue after that.

After I let her know the neurontin wasn't working she gave me some samples of Lyrica.  And after I took this I felt like it was my miracle drug - my whole body felt sooo much better (and I didn't even realize how bad my whole body had been feeling).  I could actually GET out of bed in the morning!  This feeling lasted about a week before it settled in and still helped but not quite as much...but after fighting for months with the insurance company i got my last denial - and couldn't afford the $450 bucks a month.

So up until last year - that's where I stood.  I told her the baclofen wasn't working either but she said to stay on it - she wouldn't try any other muscle relaxer nor any other drugs period as those were the proven tried and true drugs.  So I felt like I hit a wall.  At this point I started to have big problems and ended up having to have my gallbladder out - then a month later passed a kidney stone, then 2 months later had my appendix out, so everything else got somewhat put on hold.  I had been given some pain medicine to get through all of this time, so I was somewhat under control...although not feeling great.  That brings me to where I started to take things into my own hands....and to where I am now, which I'll write more about in my next post.  I'll also soon write about my PFD which dramatically ties into my IC so I can't really seperate them...but for the purpose of those with one or the other I'll try...

Hope everyone is having a happy and healthy day....and having a good pain day...we all need those.  I'll continue my story soon :)

Laugh of the Day

So I promise I'll get to more detailed experiences - I've already started drafting them!  As that's the main purpose, to convey my experiences...but lately I've been going through a really rough time both physically and emotionally for a number of reasons.  One thing you'll find out when I start talking a little more about my Vulvodynia and Vulvar Vestibulitis is that I'm currently in the process of getting Kenalong/Lidocaine shots (Down there- and oh yea...whatever visual or painful outch feeling you're thinking - its true) and using an ointment.  I have someone I communicate with that lives somewhat near me whom I haven't met, but we exchange stories - complain a little, ask questions and compare treatments.  She's on a naturopathic treatment route now, vs. the one I'm on and having success too may I add.

Anyway, the point of this quick  post is that I'm overwhelmed, exhausted and just feeling so low (aside from all of the pain and everything else that comes along with all of these chronice diseases) and after another of our long email exchanges- her last line was:

"Here's to normal, healthy, happy vaginas in the very, very near future for both of us..."

And that is the greatest thing I've heard in a while - something that someone who has no clue what we're dealing with would have a laugh at...but for us?  Because of all that we strugle with as far as this disease go - it just means so much more and just really turned my whole day around.  Whoda thunk at 26 that's what I'd be hoping for.....but you can't help but laugh.  Oh how friends can brighten your day...Hope you can brighten someone elses - I'm going to try to pass it on  :)

Be strong

I'm drafting another post on Interstitial Cystitis specifically and my experiences with it, but in the mean time I just wanted to jot down a few thoughts.  I've been through a rough few months physically and emotionally and all of that takes a toll on your body, mind and heart.  Along with the fact that a lot of us with chronic pain problems are on a lot of meds and possibly changing them often, it can affect your mood, your sleep, your job...just about everthing!  I hear often from people who are really scared - of their disease, of the treatments, of losing loved ones, of living this way...and I just wanted to tell you to be strong. 

It gets really  hard sometimes - but there ARE people who know and understand what you're going through and how hard this can be...how embarassing sometimes...and can make you feel helpless and alone.  Sometimes we even push away the ones we love or act like everything is fine when it's not.  I feel for all of you and am proud that you are living your life dealing with something that most people could never imagine...and for that you are already incredibly strong.  It's unfortunate...but it makes us stronger people even though we may feel weaker.

Have a great day - and do something that makes you smile....and someone else smile.  But most of all remember you are never alone in this... <3

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 :)