Tuesday, June 1, 2010


Good afternoon, everyone! Hope you all had a terrific Memorial Day yesterday. I honored my grandfather for his service in the US Army during WWII as a MP (Military Police.) He was very proud to serve his country and was in the Army for 4 years, 2 of those years overseas in France and Belgium. He didn't talk a lot about his Army days, just that Belgium was the most beautiful place he had ever seen.  I miss my grandpa, he died in June of 1993 of end stage Alzheimer's and stroke.  I am glad he is no longer suffering or scared to be locked inside a brain that doesn't know who the people around you are, or even yourself! Damn Alzheimer's disease! I could go on and on about how horrible Alzheimer's is, but we all know by now what devastating effects it has on the WHOLE family. I know I do - and I never want to go through that again!!!!

I woke up today feeling really crappy. Extremely exhausted (as if I'd been partying all night - I WISH!) and achy from head to toe. I took my morning pills, but they didn't work this time...just add to the exhaustion that I started out with.  There's so much work to be done around the house, and I can't do any of it. My back is so bad, bending down is a nightmare. My legs feel like something is biting them, I feel little "pinches" down on the tops of my swollen feet. When I go to look, of course, nothing is there. And then they start to itch.  When I scratch them, I get that all too familiar "pins and needles" sensation that lasts any where from 5-30 minutes. Then the pain starts back up.  Around and around we go.....I'm on the symptom merry-go-round and where she stops....nobody knows!!!

For me, the most difficult thing about having fibromyalgia is the unknown. You really don't know what will be affected next-your arms, your legs, your whole body. You can't really plan anything, because on the day of whatever it is you want to do, you could wake up with a really bad flare-up and not be able to do anything!  Then when you call to cancel, your friends or family think it's something personal.  No matter how much you explain it's not them and you are NOT antisocial, they just don't seem to get it. There really is no set of words you can use to make them understand. What I figure is, if the person thinks you are important enough to TRY and understand your position and accepts you for who you are, great.  If not, they really aren't good friend material anyway.  And if it turns out to be family, then that's really sad that they can't take the time to investigate about fibro and what you are going through.  In the years since I've been diagnosed, I've run into many types of scenarios.  Especially with friends and my boss at the hospital. I've lost a few friends and many jobs due to the fibro and while it wasn't really my fault, it still hurts like hell that how people in the MEDICAL field could shun me for having to go home sick or not being able to come in for a shift. What the killer was when I did go into work and one of my co-workers would be ill, they would get entirely different reaction to their situation.  "Oh, you should go home! You are sick!" I would get so irritated....why is THEIR illness more important than mine?  Ughhhhhh.....how I remember those days when I was working. Now that I can't work at all and I can't seem to convince Social Security of that fact, I have all the time in the world to remember those old feelings I would get over preferential treatment handed out at my work place. I was never the preferred one!!

Fibro is really something else, I tell ya. Just when you think you have a handle on it, the handle breaks.  I don't remember when I was in remission last from the fibro. The RA we have a good handle on with the Arava that I take for it, and Celebrex. I started on Savella last November and it took 8-9 weeks to totally kick in. It's a medication newly released for the treatment of fibromyalgia. I was so excited! NO medication had been "officially" listed for fibro, so this is a milestone.  It regulates two neurotransmitters in the brain: seritonin and norephinephrine. I began taking it and like most everyone else, you think you should get an immediate response. I continued to take it and felt nothing different. Just right when I was going to stop, my rheumatologist convinced me to continue it for two more weeks. He was so emphatic about it, I wondered if he held stock in it or something! I did what he said and continued it for two more weeks. My insurance wouldn't cover it, so he'd been giving me dozens of free samples.

Finally, at about the 9th week, I felt better. A little more energy. I slept better, deeper. In fact, my husband said I turned into quite the sleep "talker." I'd have whole conversations in my sleep! When I told the rheumy that, he said it was normal. And normal to have the vivid dreams I'd been having. It also raised my blood pressure quite significantly, so my blood pressure meds needed adjusting, but after that, it returned to its baseline.
Because the insurance wouldn't pay for it, the doc wrote a letter to them and within the week, I kid you not, I had the medication all paid for by my insurance! I don't know what he said, but I like it!  So I've been taking both Savella and Paxil for the fibro and some residual depression I have over my mom's death almost two years ago. I haven't had a problem with taking them both and am closely monitored.

I think I started to feel bad again because of many stressors in my life. My dad was acting up in Michigan and had a nervous breakdown and had to be taken to the VA hospital psych ward, but then was released (I think he just walked out as he was there under voluntary status after the initial 72 hour hold).  He told me he was reviewed by a panel of 20 doctors who thought that after 40 years of abusing his medications, he's all better after one week of treatment!  Oh, come on!  And the moon is made of swiss cheese!  I lectured him, told him this was his last option, as his sister can't allow him in her home anymore. Plus, he had punched holes in her wall and grabbed her arm when she wanted to leave.  She was rightfully afraid of him. So was I.  I still am, knowing what he is capable of when he can't get his drugs.  Frankie and I just can't deal with that anymore. We finally have a relationship and I'm no longer pestered by my dad wanting more and more of my pain pills.  I miss him and love him, sure. But that is where the line is drawn.

My dad never did stay in the VA rehab program. He went to a few sessions and now is staying with old family friends. I hear he is looking for an apartment for seniors and actually found one with a rent he can afford. He filed an application and I believe he moves in soon. Of course, he has no furniture, but he can worry about that. I have enough of my plate.

My other worries are of course, my swollen feet. But I'll find out if anything is up with my heart on June 11th. I figure it's nothing too bad or they would see me sooner, right?  I haven't heard a thing about the sleep studies yet.  And then my sweet, dear hubby. Having to go through this cancer crap again. I feel so badly for him. But we will get through this together.  The surgeon has his test planned for this coming Friday to look down into his stomach and see what the "shadow" is that showed on the cat scan he had last week.  He'll get the PET scan tomorrow.  And probably surgery next week or the following.  I'm glad they are moving fast...get rid of it as soon as possible!!!!

Well, my dear friends, my eyes are blurry and weary and the "fibro fog" is setting in fast. I can't remember what I wrote here, so please forgive me if I've repeated myself or gone off into the twilight zone. Just beam me back! I hope and pray for a better day tomorrow.
I hope you all are well.

Until next post,

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