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 :)