Guilt

I think the biggest shock to me through all of this is the emotions that it brings up.  There is frustration at the health care system.  Anger at the cavalier attitude that the doctors seem to take.  Fear of the unknown.  Embarrassment of my now weakened body.  Sadness at the mobility I have already lost.  Uncertainty of what is about to happen.  Relief that whatever this is, isn't worse than it is. 

But what I was very unprepared for was the guilt.  When I was a teenager, I used to say "Guilt is a wasted emotion. There is nothing you can do about it so you are wasting your time feeling guilty about it."  I have held that belief through the years.  I have always tried to live above reproach.  Trying to make the right choices, do the right thing so I don't have to feel bad about my choices.  Didn't always work but I thought I was doing pretty good. 

Here is the part of guilt I didn't get until now.  Almost 39 years old and I am still just figuring this out.  Sometimes the things you feel guilty about are not your fault.  They are completely out of your control.  And because there is absolutely nothing I can do about it, I feel guilty. 

I feel guilty for not being able to do my job in the manner that I am used to.  I feel guilty that my husband and kids have to walk beside a scooter in Walmart.  I feel guilty because at work we take turns working Saturdays and I can't take my turn.  I feel guilty that I can't walk my dog like I used to.  I feel guilty that I can't open the dishwasher detergent anymore.  I feel guilty that I need help.  I feel guilty for not being able to do what I usually do with Forever Friends. I feel guilty for the education I have taken and now can't use.  I feel guilty for feeling guilty. 

I know that I shouldn't feel this way.  My brain knows that I shouldn't.  I could not ask for more support from my family and co-workers.  There is no reason that I should feel this way.  But I can't help it.  I did not expect this to be my life.  I know that no one ever expects it to be them.  We take our health for granted everyday.  I was no different.  I just had no idea that this overwhelming feeling of guilt would run so deep. 

And the guilt goes on.
And the guilt goes on. 

Confusion and Healthcare

I haven't had much time to consider what all has been going on lately.  Which is kind of odd because not a lot has been happening.  I left you all with a lot of information on rheumatoid arthritis.  Because that was my original diagnosis.  As soon as he first doctor told me that, I was pretty quick to do a bunch of research, find out what to do, how to help myself and go from there.  I was ready to deal with it. 

Then the rheumatologist told me that she didn't think that I had RA.  She said I was in too much pain for RA, too much generalized pain.  Not just around the joints.  My hips, knees, and ankles hurt every day all day.  My shoulders, elbows, and wrists hurt some of the time.  Mostly when I have to use them. Proof that hauling my fat ass around is harder than holding my head up.  LOL

So the hunt began again.  What have I got, where am I headed.  What does this mean for my family and myself?  So all I know now is that I have a autoimmune disorder with my connective tissue.  She sent me for blood tests and a bone scan. 

So in my frustration, I thought I would go to the emergency room to try and get some help.  Since the 21 of March I have limped with pain in my hip.  The pain has spread throughout my body.  I have tried several different pain killers.  As my pain increases, so have my prescriptions.  Three weeks ago, I started using a cane.  To me, it has come to an emergency. 

I spent 24 hours in two different places.  Gave a whack of blood, saw a neurologist and was sent home with an MRI marked urgent in 2-7 days.  It turns out that my MRI is actually in 3 1/2 weeks but hey who's counting. 

So tomorrow back to the rhuematologist.  At the very least I am hoping for better pain pills. 
Fingers are still crossed for a freaky jungle flu that can be cured with a pill...

After my long awaited appointment

I have decided to revive this platform for this blog.  Although I know that most people that read it also read this.  However if people who don't know us, find the FFOH blog, I don't want them to be confused by what we do. 

So here is the update on my rheumatologist appointment.  She doesn't think I have RA.  Which is good,...I hope.  She thinks I have something that mimics RA.  I have a lot of muscle pain.  Too much apparently for RA.  The pain is throughout my body.  More noticeable in my bottom half because it is load bearing.  (And with all the weight I gained on my last migraine pills its quite a load.)  My spine and neck are good.  So that's good.  Almost everywhere she touched, hurt.  She asked a ton of questions and took a lot of time with me.  I appreciated that. 

She knows it is an autoimmune disease.  However, she thinks it is more to do with soft tissue than just joints.  There are beginning deterioration in both hips and both knees.  Apparently with RA flare ups are different than just the constant overall pain that I have. 

She gave me a different anti inflammatory which seems to be helping.  She said not everyone can use naproxen.  Apparently I am one of them.  That would explain why they never helped with my migraines when I was prescribed them.  She is sending me for a bone scan.  She sent me for a bunch more blood work.  So now we are back to the hurry up and wait part of the health care system. 

When I had a name to research and learn about, I felt better.  I felt more in control.  I had something to work with.  I was already getting my head around it.  Now I feel pretty lost again.  One thing stood out in my mind.  Everyone I talked to physio, etc.  told me that I needed to slow down.  That pushing through the pain would cause more damage.  But she told me that with whatever this is, that it won't matter.  She said not to do things that hurt but pushing through and trying to ignore the pain, is fine.  It won't matter.  That scares me a bit.  But at least I got a disease that suits my personality.  I guess I'm good with that. 

Thanks for reading.  I know that you all care or you wouldn't bother to share precious time with me.  For that I thank you.