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 :)