It's Real, People. I Promise!

Yesterday my husband said something to me that hurt.  Sure, it's not the first time it's happened and I'm sure it won't be the last....but this was really different.  This is something that I guess I just realized, REALLY realized, people without an invisible illness, like RA, must honestly believe. 

He said, "Beth, you've been to many doctors over the past two years.  A couple of them didn't think you have RA.  A couple of others didn't think you have fibromyalgia. Maybe it's time to try something different..."  I was trying to guess what his marvelous plan was, but finally just took the bait and asked, "What can I do?  What do you think I can do to finally find a definitive diagnosis and get started on a treatment plan that will possibly end this almost 2 year flare from HELL?"
Guess what his idea was..... it's a good one......"What about a change in attitude?  Maybe having more fun, going out more, etc?"

Oh, was I pissed off. 

Then I started thinking about all the people who don't understand the relentless pain I have been dealing with (which is pretty much all my friends and family) and it dawned on me that it's really difficult to relate to something you don't have in your life yourself.  I mean, I have no idea what it feels like to:

break a bone,

 

get stung by a bee,

or God forbid be attacked by a shark...

BUT...I do believe the people that experience these things are in pain---even though I don't know how, exactly, their pain feels.  I just know it is pain.  Pain that doesn't go away by merely trying to be happier or getting your mind off of it. 

Pain is your body's way of telling you something is wrong.  Once you know what is wrong, you can begin to find the best way to get better. 

I want to help people understand that just because you can't see what hurts those of us in my condition...and it seems like we don't just "get better" like most people....we are in legitimate pain.  It's real people!  

Stepping off of my soapbox and wishing you all a wonderful day!

*hugs*

My husband says I'm becoming an invalid

Because I have had a really bad week and have felt crappy, my husband seems to be getting great pleasure from kicking me while I am down. He managed to imply it's all in my head again, he criticized the fact that I didn't get all my chores done this week, and he complained about me never wanting to go out of the house much anymore.
It's great to be loved. Haha! I'm seriously thinking about getting out of here. I need out. I just want to go hide in a hole and slowly wither away until, finally, my heart beats for the last time and all the pain is gone.

How To Know When To Call Doctor

It's very frustrating when you have no idea WTF is wrong with you. Duh, right? If you know you have been exposed to the chicken pox, you know you don't have to go to the hospital when you break out in red, itchy bumps all over your body. (an old fashioned example since most people get vaccinated for c.p. now) But when you have mystery illness from hell, you are left to second guess a lot of the time.

This morning I felt a lot better fatigue and pain-wise, but right away I noticed something "not right". I felt like anytime I walked more than a few feet, I would feel almost out of breath....and definitely like my heart was pounding extra hard. When I sat down to edit pictures, it was better, but still the strange feeling in my chest persisted.

At around 2:00, I had to pick my daughter and 2 of her friends up from summer school then take them (as well as my youngest son and stepson, and their two next door neighbor friends) to the mall. The girls were doing lunch and then a movie, the boys-just a movie. Anyway... I started to feel a bit icky on the way there and I developed one of my random hives (this one was HUGE and on my left knee). Meanwhile the chest pressure is getting worse. I tried to relax by the pool when I got home, but I felt too uncomfortable. I went to lie down for a bit. My heart rate was normal for me at around 85. I didn't know what to do.

When I went back to the mall to get the boys, I started feeling a little nauseous. I didn't know if this is normal in people who have whatever the heck I have because nobody knows what the heck I have!

All I know about my illness is:
1. It is a thief- because it steals my time with my family and
friends. It has stolen my life from me. I feel like I don't enjoy life nearly as much anymore. That capability has been ripped off by this stinkin' condition.
2. It is a fraud and a liar-because it causes all of my blood work to come back NORMAL, when something has to be very wrong for me to hurt so badly every day.
3. It better not end up serving a life sentence. The two years I have spent trying to identify the bastard, have been the two worst years of my life. Pain, meds, doctors who don't believe, more pain, fatigue, letting friends down, letting family down, vial after vial of blood work...need I go on?

Anyway. My husband didn't want me to go to the ER tonight when I really was about to go.

I survived the evening, so I guess he was right. See? I would've made the wrong decision.
Ugh.

Good night!

I

Nobody Understands

I figure this blog is my safe zone.  IF anyone is reading, you probably have an autoimmune illness, or some other painful condition that "normal" people don't understand.   Thing is, "normal" people understand Cancer.  We all hate it!  Problem with our conditions is that people don't UNDERSTAND how we feel. 

I hate the fact that I still don't have a solid diagnosis.  I really do.  I am considering going back with the original doctor who did the most thorough testing and diagnosed me with USpA.   I don't believe I have fibromyalgia.  The fatigue is the symptom that matches, and that goes with any number of other conditions.  I need a solid diagnosis so I can get on something to get me into remission or out of this flare that I've lived in for almost two years.  I'm so tired of hurting.

Nobody knows this pain.  I swear my family and friends (those I have left) think I'm faking or exaggerating or being a hypochondriac.  They don't know how truly sick I feel.  Or if they do, they don't care. Maybe that's it.  Maybe they are just so sick of me being sick that they just don't listen or care anymore.

My current doctor won't refill my pain meds that I take at max twice a day, but typically only once....a few days not at all.  He gave me tramadol which is doing NOTHING for my pain.  I'm weak.  I have no appetite because the pain is so horrible that it makes me nauseous.  I can't live my life this way.  I'm seriously thinking about ending it all.  (Please don't flame...it's how I feel)  I know my kids would be better off with their father and step-mom.  Two HEALTHY parents who love them.  I'm just way too tired and in so much pain to be any good for anyone.

I need help.  I need a diagnosis.  I am NOT going to another doctor.  I am just wanting something to work for me.

Please.

Rest In Peace

I was saddened to read about the death of a blogger I followed. http://rasuperbitch.blogspot.com/
She was bright, witty, and made me feel "normal" for being abnormal. I don't know how she died, but I do know she was in her thirties with a young son and a loving husband. Dammit, life is NOT fair!!!!!
I'm praying for the family of rasuperbitch. At least she is no longer in pain. In that respect I sorta envy her.

And now for the newest symptoms......

I've started experiencing muscle twitches and weakness.  Nothing serious.  Not like I'm having a seizure or anything.  Very subtle...kinda like when you are just about to doze off and you jerk a little...?  But the weakness is there.  I feel the weakness.  It's in the muscles of the bottom of my leg mostly.   It's so strange. 

Nobody Gets It

Today just sucked.

Sores on my tongue were driving me crazy.  Pain level was a 9 a good part of the day.  I got a hive in a new spot....on my left hand.  And I was busy all day....so no nap.  (ugh)

My husband got floor seats to the Mavs game, and I told him I didn't want to go.  He made me feel guilty about it.  He STILL is bugging me about having to turn down these tickets.  He doesn't get how terrible I feel today.

In a couple of weeks, I am going to San Antonio with my daughter's choir as a chaperone.  It will be a lot of fun....but a lot of walking.  I REALLY am uneasy about going.  I have been putting off writing the 360.00 check and I finally told her today that I wasn't sure I could go....BAD IDEA.  She is correct in telling me that I *did* already commit to going---months ago.  She was really upset and reminded me that it HAS been stormy a lot the past few days and I've told her that bad weather affects my pain. The weather won't be like this in San Antonio and furthermore, all the room assignments have been made.  (hehe)

But seriously, I couldn't tell her no.  I have to go. 

Nobody gets it.  Nobody knows how completely awful I feel.  I'm really starting to fall into that wanting-to-just-disappear depression. 

I need to find a doctor who can help me.   Soon.