Fun and Frustration

I know I haven't blogged in awhile.  I've been busy with Toby the Rescue Rat.  If you're friends with me on Facebook, you already know the story.  He's my sweet boy and gives me something to look forward to each day.  He'll be three weeks old tomorrow and is in his independent stage now, wanting to explore and taste test crumbs on the floor.  Toby makes me happy and takes my mind off things.

I've been so exhausted the past few days, like I'm always drugged.  That feeling you have when you come out from anesthesia and everything is fuzzy...that's very close to how I've felt.  I honestly don't know how I've functioned at times.  I also went cane shopping.  Once in awhile my legs feel like they're not going to work, so I thought I'd get a cane to use occasionally.  I don't want people to think I'm milking my condition though.  I shouldn't care...but I do.

Some days the pain is overwhelming.  I just want to curl up in a ball and stay in bed, but I can't.  Life still happens and there's nothing I can do about it.  It's very frustrating when I can't do the things I want, when I want.  I let people down and that's not the type of person I am.  I'm supposed to be independent and taking care of others, not me needing the help.  I hate it.

I'm trying to keep a positive attitude, but some days it's really hard.  Like today.

Family Affair

Cydney is home this weekend...now I'm trying to figure out how to tell her about my Fibro.  Over the years, she's always given me a hard time about needing naps in the afternoon and not being able to do as much.  Recently, she mentions my weight a lot and always telling me not to eat so much, joking about my big butt, etc. which now I'm figuring out my weight gain has a lot to do with Fibro.  Anyway, I don't want her to think I'm just a fat, lazy mom.  Now that I have a name for my condition, I want her to understand that it is why I am the way I am.  We did tell her a few months ago about Nathan's MS and she seemed to understand that it's serious but he's ok, it's not contagious and so on...she's pretty smart.


I haven't told my mom about my diagnosis either.  She knows I haven't been doing well lately and I mentioned I thought it was Fibro, but I didn't bring it up when I saw her yesterday.  She can see the way I walk and how hard it is for me to stand after sitting, but I don't want her to worry.


Already hurting today...mainly in my upper body and my head is killing me.  I don't want to spend the day laying around, I want to hang out with Cyd, but I also have to work a short shift tonight and need my energy for that.  


I'm damned if I do and damned if I don't.

New Beginning

Now that I know 100% what is wrong with me, it's helped my attitude a lot.  I've only been back on the Cymbalta for two days and I can feel a change.  The pain is still there, but it's not nearly as bad as it has been...level is down to a 4-5.  I worked a 5 hour shift last night and usually I'm hurting so bad right away that I can barely stand.  I didn't start hurting much til halfway through my shift and then it was a bearable pain, not overwhelming.  Nathan and I got off the same time, so we walked around the apartments.  I couldn't believe it, I went from shuffling gait and barely could move to walking 1/3 of a mile in just a couple days.

I'm hurting this morning, as I usually do first thing, but it's probably a 5.  I may have overdone it last night, but I needed to walk.  If anything, it was more mental than physical exercise.

I have a couple days off now, so I can take my time cleaning house and resting when I need to.  No need to rush around.  I am supposed to see Cydney sometime, but can't get ahold of her dad...so who knows.  

Anyway, I know how to deal with my illness.  I can't be Wonder Woman anymore but at least I can be fairly normal...whatever that is.

The Diagnosis

I went to my regular doctor yesterday because I couldn't take the pain anymore.  I could barely walk half the time and I was miserable.  I couldn't wait to get to the neuro on the 11th, and I was 99% sure it was Fibro anyway so I called the doc and got right in.  She asked me questions then did the pressure point test to see where my pain was...almost everywhere.  We then decided I did indeed have Fibro and am in a really bad flair up.  Then we figured out what set it off... let me back up a bit.


For years I'd been taking Cymbalta for depression.  When I moved back to Nebraska in 2010, my new insurance wouldn't cover it so I lived off samples from my new doctor.  I started seeing my current doc this year because she's awesome with Nate and asked what she thought of getting off the anti-depressant.  She put me on Celexa in March because it does pretty much the same thing mentally, but is much cheaper without insurance.  Little did we know, all those years of Cymbalta was keeping my Fibro at bay.  So since that started getting out of my system, I slowly started having a flair up.  I even remember telling Nate a few weeks ago that I just didn't feel right, but pretty much chalked it up to eating bad, getting older and being overweight.  Then things got worse and here we are...


So yesterday, Doc put me back on Cymbalta and said I should start feeling better in a couple days.  Thank the flying spaghetti monster in the sky!


I'm so glad to have an actual diagnosis.  I really was starting to wonder if everything was in my head, but now I know.  I can deal with it properly.  I can readjust my lifestyle to suit my issues...the fatigue, brain fog, pain, etc.


First thing I should do is probably get out of this third floor apartment.


*Here is a great link about Fibromyalgia:
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/what_is_fms.htm

I'm Only 34, Dammit!

I was talking with my man, who has MS, about how we waddle like penguins sometimes because our legs don't work right.  We were laughing about it, but then I mentioned how I see elderly people who move better than I do, and it made me sad.  Like really hit me.  I started crying because I feel I'm too young to be hurting this much.  This sucks.


I just want more good days and they're not coming.  Most days my pain is about an 8 on the 1-10 scale and on a good day it's down to 5-6.  On those days, some of the pain is replaced by numbness.  I love those days, they just don't come around very often.


I also just tried to get some juice and could barely pick up the jug.  Then I couldn't open it, so Nathan had to do it for me.  He also helped me do housework today.  I feel so useless...like a big pain in the arse.


Maybe I should go away so I'm not such a bother.

Work With Me, Body O' Mine!

I finally have a day off and I have so much to get caught up on...mostly laundry.  I don't know how in the world I'm going to do it, considering the washer is in the basement and I'm on the third floor.  I may just bag it all up, throw it over the balcony and take it to the laundromat.  But then I'd have to carry it back upstairs...ugh.  I can't win.


I've been reading a lot about Fibro and it makes sense.  It seems people who had a lot of physical and emotional abuse growing up are more prone to developing FM.  Also, I was sick all the time as a kid and that is a factor later in life.  The only reason I'm still wondering if it's MS is because of all the numbness.  My MRI was clear, although that doesn't necessarily mean it's NOT MS, I'm thinking more Fibro.  Either way, it sucks.


I think the worst part, besides the pain, is admitting I need help doing things.  I've always been very independent, but now I need more help and can't do as much as I used to.  Last weekend I helped my mom around her house and I thought I was going to die.  I actually wished for death, especially by the time I got back home.  But I still think I'm invincible and can do whatever.  I just don't like asking for help, especially from my man, since he has MS and is usually hurting too.  I'm damned if I do and damned if I don't.


Some days the pain is so overwhelming...it really drags you down emotionally.  It just gets old, hurting constantly.  On a good day, my pain is down to a 4-5 (scale of 1-10) but most days, it's at least an 8.  I often pray for the numbness to set in, although it has its drawbacks too.  Counting back change to a customer is such fun when you can't feel your fingers!  hehe


I'm exhausted...think it's time for a morning nap.

Pain, Pain Go Away...

I almost started crying at work, I was in so much pain.  I feel like a broken record and no one really knows how this all feels, except those who suffer also.  I get so tired of acting like everything is great when it's not.  I'm not ok!


Right this moment, my head is pounding, my right arm is either numb or hurting and my right thigh feels like I have a knife in it.  Yes, most of my pain is on my right side but the other side often hurts too.  I just want to scream obscenities out the window.  Oh wait, there's goes the stabbing pain in my left heel.  Guess it felt left out...


No matter how I move around or stretch, it doesn't go away.  Yea, now I'm in tears...

Something Witty Goes Here...

I don't know why I'm even trying to type.  I hurt so bad today... I spent the weekend at mom's running errands, mowing her lawn and helping put up a big shelf.  Of and on all weekend I was either in pain or numb, but now I'm really feeling it.  On top of that, I worked a seven hour shift today at the store.  OMG...


I need to clean the apartment, do laundry and stuff, but there's no way.  I can barely move.  Most of the pain is in my lower body, of course, but my arms weigh a ton and I keep getting sharp pains in them.


So in between writing, I managed to get a load of laundry going.  Now I'm practically in tears...


I swear I'm not exaggerating.  Trying to relax and think of other stuff...

What now?

So what's going on with me now?


I've asked that question soooo many times before, but I've finally narrowed it down.  I think.  At first I was thinking MS, which is still a small possibility, but my MRI last week didn't show any lesions on my brain or spinal cord.  I did have some white matter but was told it was nothing and probably causes my migraines.  Ok, so now what?


The more I've been reading, I really think I have Fibromyalgia:

A chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. I've had issues of all kinds for years - nausea and dizziness off and on, pain, numbness, fatigue, stomach problems, horrible menstrual cycles (sorry guys)... you name it, I've probably experienced it.  So many tests and doctor visits...one doc even sent me to a psychiatrist to make sure it wasn't all in my head.  But no real answers.  The flare ups came and went every so often and I just learned to live with it.  Always exhausted and hurting really sucks, but I just assumed it was part of getting older and being overweight since no one could ever figure anything out. Fast forward a few years, and my boyfriend Nathan, gets diagnosed with MS.  We're dealing with that, but it makes me think more about the issues I've had for the past 7+ years.  It would be weird to have two people in the same household with the same disease, but I suppose stranger things have happened.  I decided to go to our doctor a couple weeks ago, and as I said, had an MRI done to rule MS out.  Nothing major showed up and since I'm still in the middle of a flare-up, Dr. B is referring me to a neuro out of town.  In the meantime, I've been reading a lot about Fibro and it seems to fit. How do I feel during a flare-up?  Well, imagine having the worst flu...the kind with the really horrible body aches.  Multiply that pain times 1000 and you may understand what Fibro pain is like.  Then lay down on the floor and have a Sumo wrestler sit on you while you're trying to get up.  That's what my limbs and chest feel like...very heavy.  Stay up for about 4-5 days straight with no sleep and you'll feel the fatigue.  Run 5 miles without stretching first, or being in great shape for that matter, then you'll know what the body stiffness feels like.  Sit still  and let someone put spiders or crawly-type bugs on your legs and feet.  Then there's the numbness...just like when your foot falls asleep or sit on your hand til you can't feel it.  Oh and don't forget the times when it feels like there's electrical currents running through your whole body.  It's such fun. In my 'career', I'm a cashier...so sometimes my brain doesn't tell my hand the right messages and it takes awhile to grasp small things like coins.   People look at you like you're an idiot when you're talking to your hand.   Co-workers think you're lazy, people tell you all the time how tired you look...why don't you just come right out and tell me I look like crap? This week has been rough...lots of pain, a few tears, and praying for the numbness to set in so I don't hurt. I just hope it settles back down soon...I don't go to the neuro until June. <3 Peace & Blessings <3