A new one to add to the list...I have lupus

Well, as I mentioned in my last post, I finally had my Rheumatologist visit 2 weeks ago.  Of course I had everything ready to go the night before - I keep these packets on hand with all my current meds, all my past meds, all my current/past treatments, all my doctors, family history, diagnoses, surgeries/procedures and symptoms.  From my experience Doctors LOVE it because I just highlight each section title and bullet point everything - its really easy for them to read and they get a better idea of the whole picture - especially things ive tried and they havent worked....so they can see how long and painful the struggle has been.  So of course I forgot this packet and all of my recent CT/Ultrasounds, etc.! I started freaking out because lately my memory has been so aweful I knew I couldn't recreate everything that was on that list and I knew I waited 5 months for this!  So in any case I did my best to draft it down while I waited, but she did the physical exam as well as listen to all of my symptoms etc.

She definitely agreed with the Fibromyalgia diagnosis and the CFS, but also thought I may have some arthritis and wanted to redo some blood tests as well as order some new ones, and get an Xray of my pelvis for arthritis in my SI region.  Well this was a Wednesday so she told me to call her the following Friday to discuss.  So after that loonnngg week and a half I called - go no response - called again, still nothing and finally left an after hour message - nada.  I was already soooo nervous (even though i really thought that just maybe she may find a little arthritis but that's it because I'd already had most of the big tests) - now I had to wait out the weekend.  Well Sunday night, I was outside and came in and had a message from her saying she was so  sorry she didn't get back to me and most of the tests weren't very concerning but there was one she wanted to talk to me about but she wouldn't be in until Tuesday - ugh...first when do doctors call with results at 7:30 on a Sunday night??? Second...two more days of torture!!

So I called yesterday even though she promised to call to make sure she had all of my numbers....then 5:30 rolled around and I thought - again??!?!!  Just then the phone rang and it was her. So of course I'm expecting to hear about the x-ray which I already know I have SI dysfunction and arthritis in my knee and a bit in my jaw so that wouldn't suprise me when she went straight to the ANA IFA test.  For those of you who don't know...the ANA blood test is a test for autoimmune diseases - the anti-nuclear antibody test by indirect immunofluorescent assay - some fancy words for a specific way of looking for autoimmune disease markers.  I had one done in March - just a plain titer and it was a little elevated but within normal limits, but apparently the IFA is the better version of the test.  Well this time it turned up positive.  It was in what she considered the middle of the results....not extremely high but definitely high and positive.

So what does this mean? My doctors and family have thought for some time now that I may have an auto immune disease because of all the different organs that have been affected and how many surgeries i've had and things I have been diagnosed with.  Just - after it came back last time - I was relieved.  Everything I have really sucks and is painful...but it's never going to hurt me or kill me.  I just have good days and bad days.  But now all of a sudden - not that it will happen, but things that have already been affected by previous surgeries/conditions like my heart, liver and kidneys are at risk...my organs are at risk.  A lot of people with lupus live a full life, but when their time comes, pass on from complications of lupus. Well Crap...crap crap crap.

On the plus side, she thinks its on the early side of things and everything is just being made to feel worse because of my Fibro and IC flaring.  She's starting me right away on an anti-malarial drug, when started early on with a lot of young women can bring the lupus to a slow progression and save any attacks on the organs themselves so I'm very happy to know this.

So now, I let my regular doctor know and told her what the Rheumatologist said and the medication she put me on and now in 2 weeks my doctor blocked a chunk of time to meet with me and talk about the diagnoses and my current medication list which is fairly expensive.  All I know is what keeps me able to work is the Soma 3xday and the Norco 3xday ( which I usually cut in half and spread out).  I actually went off most of my pain meds for almost a week last week to see what my real symptoms felt like (as I was working from home) and didnt realize just how much joint pain I had.  I also realized there's no way on earth I'd be able to work if I didn't have my meds.  I was in so much pain, was so stiff I couldn't get up and by afternoon was horrendous and absolutely couldn't sleep.

I am so nervous now that shes going to want to change these meds so now I've got 2 weeks to worry about that on top of everything else.  The savella has started to help with more of my pain in the extremities and the Celexa (only 10 mg at night) helps me sleep and level out my mood.  I'm decreasing the tramadol and only use the valium after sex now.  So I really am reducing these on my own.  I will just definitely have to see a specialist about medications if she doesn't want to prescribe them anymore...I Cant not work.  I also can't sit around or lay in bed all day in pain.  That may not even be what she wants to discuss, just so freaked out right now in general I guess.

So anyways, I'm trying not to get too overwhelmed....I've just always kind of expected the diagnoses I've gotten in the past and this one hit me like a ton of bricks.  I've got to do some more research about it in general as I haven't told anyone but my doctor yet - like my family and boyfriend need one more thing to worry about.  Anyway, sorry if I'm more Debbie downer today, but wanted to let you know how it went.

Trying to stay positive and knowledge is power so I'll feel more in control when I know and understand a bit more :)  Have wonderful weeks everyone!

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 :)

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

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.

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.