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*

Here We Go Again

I am going to call one last (I hope) rheumatologist tomorrow.  I had to stop seeing the one I've been going to because he is not on insurance and since he still hasn't diagnosed me, it's just too dang expensive.  I told him and he totally understood.  It sucks having to start over, but we have to do it.

Meanwhile, I feel like I'm dying.  I'm not kidding.  I'm sicker than I've ever been.  I'm in so much pain.  My joints in my knees, fingers, and toes hurt all the time lately.  After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day.  My chest is now hurting a lot of the time, as well.   Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time.  I'm just not feeling well at all.  Quite frankly, I'm scared.

So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork.  I need Dr. House!  (don't I wish!)

Seriously, though, my gut tells me it's lupus.  My last doctor was going to test me again for it, but he never got around to it.  I don't know what to think or do anymore.  All I DO know is that I am getting sicker.  I need help and I pray that I can find a doctor who can figure this out.

I've been reading blogs every night, but just haven't felt like writing (or even commenting).  I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way!  and 2~to keep a journal/record of my symptoms...my memory sucks these days.

Hope you all are doing better than I am.

I want answers!

It's been 7 months now. I've had pain in my arms and legs for 7 months straight. I've had fatigue that has made it next to impossible to accomplish my daily chores around the house. I feel like an old woman, yet I'm only 41.

I've seen my family doctor, a rheumatologist, and infectious disease specialist, a vascular surgeon, and on orthopedic surgeon. I've had more blood drawn than I care to think about and I've had a couple of x-rays.

Results? No answers. Everything is normal. I have Raynaud's.....which I've known for a while and it doesn't bother me much at all. And just a few days ago, I was told the excruciating pain in my foot that hit me a couple of weeks ago is gout. GOUT?

The rheumatologist put me on prednisone (a low dose, I guess). I felt less pain while on the 20mg but as I started to decrease the dose to wean off, the pain returned to normal. I hate prednisone, by the way. It makes me an emotional mess!!! I will NOT take that again unless I absolutely have to.

I've struggled with not knowing exactly where my pain is located....and I know that sounds weird. I couldn't tell if it was muscular or in my joints. I believe it is in my joints now. This foot pain seems to be starting in the joint at the base of my big toe and I feel how the pain radiates throughout my foot and even up my leg at times. I feel as if my wrists and fingers are getting stiff. My knees and ankles feel that way too. It could be my muscles aching...but I am thinking more that it is in my joints.

Anyway....I want to feel better. I want the pain to go away. I know none of this can happen without a diagnosis. I've heard the word "fibromyalgia" many times and I admit that some of the symptoms match up quite perfectly. I don't know that I have the "trigger points" that I've read about, but I do have many of the other lists symptoms. I've also had many people tell me that it's probably just stress. I've been told to "be happier" and things will get better. Exercise and I'll feel great. Well...I'd love to do both of those, but the way I feel is getting in the way.

I want to try to keep this blog going as a journal....so that maybe I can look for triggers or patterns. Anything to help get to the bottom of my mystery health situation.