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.