So--two posts in a year and 1/2 not bad right?  Ah, I started this when another friend of mine started a blog and thought that would be an awesome way to keep track of things--post them on here and they are there forever--easier than writing it out in hand because I can type quicker, well then I forgot about it--so it sat here.  I like blogs--if people want to read them they have to search you out and they can't complain if you are saying this or that because nothing is making them read it--right?

I've been having a hard time these past few months.  Not only with life in general but in dealing with the day to day pain 24/7, fitting people and activities into my life and changes in who I thought were my 'friends'.

Pain management is no longer following me.  I tried their treatments of water therapy, IV Lidocaine infusions (yea, real fun getting stuck 3-4 times for an IV each time because my veins suck),  and Savella---yes, I broke down and tried it--was a 'last resort' option.  Water therapy was nice when I was in there--but I have anxiety issues with driving in this insane traffic and the office was 30 minutes away with no traffic---so it was not helping in fact was making things worse because of the increased stress. 
The IV Lidocaine infusions did absolutely nothing.  I felt a little fuzzy when it was infusing but that's it.. no change in any of the pain I feel daily.  The Savella--I had to titrate up to the dose that is recommended and when I got there I was on it about 2 weeks and couldn't tolerate it anymore.  It was literally making me scratch the skin off my legs because I was so itchy.  So that's it.  Pain management says they have nothing left for me.  I've already been on all the drugs that they try (Cymbalta, Lyrica, Flexeril, the Lidocaine and Savella) so they want me to see a nutritionist because if I lose weight and start exercising it will "all go away" and another rheumatologist.  Both in Portsmouth--so both about 40 min away and through tunnels and more stress.  So I am in search of a good doctor that I can see near me and will be switching to Tricare Standard.  It's frustrating seeing different doctors each time I go to see anyone.  Telling the same story over, or trying to because they want you to remember it and not go off papers and since my memory is shot sometimes I don't get things right, so it makes it look like I'm either trying to hide something or I'm crazy... frustrating for sure. 

It's hard trying to get people to understand how I feel, and then if I say something I feel like I'm always complaining about it.. but it's ALWAYS there, and I don't know how to not feel hurt, frustrated and bitter about that.  I know others have it worse and have better outlooks and motivation and attitude than I do--but you know what?  It doesn't make it any easier.  All the time it hurts in my lower back, my legs/knees, my ribs, my elbows, and the occasional stabbing pain in my head.  All the time I feel lost and like I don't know how to find my way back.  It's not normal to feel pain all the time without a reason--I mean I didn't suffer trauma or surgery or an accident--it's just there, because my body doesn't read the nerve messages correctly.  There is no 'marker' telling you where I hurt, so if you look at me I look just fine---when in fact I'm so far from fine I don't know if I can find my way back sometimes.  A wonderful woman by the name of Christine Miserandino describes how having an 'invisible illness' is to a friend of hers here:  The Spoon Theory 

So--I don't always say things in the right way--I try to make sure people know that about me because I'm not trying to give myself an excuse but there are many times I can't come up with the right words when I'm talking, or I say what I'm thinking before I get it straight in my head... sometimes I just can't get it out at all.  It's scary--and I'm really hoping that it's all related to the Fibro Fog--because the other alternative is worse.  I have relatives on my Father's side that had Alzheimer's.  Some at a quite young age when dx.  Now that--I don't know what I would do if I had that dx.  I've watched people in different stages and it is so sad...(Think--'The Notebook" and you get it?)

So sometimes it's hard finding a friend who will care enough about you to forgive you when you screw up, or when you can't make it to an outing because you hadn't slept all night from pain, or just don't feel up to being around a crowd.  And that is a subject for another time.....

So there is a bit of my rambling mess...