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 :)

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!

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.