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 :)

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 :)

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!