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!

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 :)