Tuesday, October 27, 2009

Fibro Sucks for Having Arguments

Last night, Don and I were discussing minutiae (again) and came across a point of contention between us.  We love to discuss controversial topics and compare our thoughts on things.  Most times we agree (almost sickeningly, according to some spectators), but there are times when we just butt heads.  Both of us desire, very strongly, to ensure that our respective points are clearly understood by the other party, in the hopes that the disagreement can be resolved simply by clarifying our points.

Anyway, we got into this heated debate and I realized how shitty it is to be the one with mental faculties compromised.  Such a disadvantage can cost an enthusiastic debater, not only the argument, but some pride and self-esteem, as well.  I can usually hold my own, but last night I observed my cognitive shortcomings getting in the way of my communicating my oh-so-relevant points.  It was basically like this:
Don: "You said that the only reason..."
Benia: "No, That's not what I said!  I never said 'the only', I--"
Don: point #1, POINT #2...
Benia: "WAIT!  Let me FINISH!!"
Don: "Okay, what?  Say what you gotta say."
Benia: (thinking)...
Don: POINT #3--
Benia: "No WAIT!  I'm NOT DONE!!  That's NOT what I SAID!!  LEMME FINISH!!!"
Don: (waiting patiently, with an impatient sigh and some not-so-subtle eye-rolling)
Benia: "Um.. so..." (choppily bodged together sentences of barely acceptable English, forming some semblance of what I really wanted to say, with pauses unintentionally interspersed)...
Anyway, you get the picture.  The way Fibromyalgia affects my cognitive abilities, especially my ability to find the precise language I need, and the time it takes me to find those words, really....um... frustrating.... GRRR!   Ya know?

The fact that I have the ability to take my time and ponder what I want to express using written words is my saving grace.  If I didn't impress myself with they way I communicate in writing, I'd be convinced that I'm stupid and give up on a lot of things.  Thank goodness I can take as long as I want (within reason) to find a word or phrase in e-mails and blog posts.  I'm practically a friggin' genius on paper.  But when I open my mouth to speak, and discuss things on the fly - oh who knows what I'll come up with?  

Most times, when live discussion is pressuring me to keep talking, I find myself torn between two words or phrases (sometimes they are both acceptable, but sometimes they are not) and they end up coming out morphed into some nonsensical hybrid, then I quickly correct myself by choosing one or saying both correctly, to scoop back up some of my dignity in front of the other person or people.  

Other times I just wait and wait for that word or phrase that I KNOW is hiding in that dusty brain of mine, but it doesn't come until the conversation moves on to a different topic, has completely ended, or sometimes not until days afterward.  Yes, sometimes, days after conversations I've had, I still struggle to find the right word or phrase, or the name of someone or something.  It's like unfinished business and it nags at me and distracts me from the task at hand.  I usually give up if I can't figure it out in a few days.  I figure it will come to me when it's ready - so why bother worrying over it?  I'll be driving to work one day and suddenly exclaim in victory "bergamot!" (and smile the rest of the ride).

I'm glad I got this off my chest.  I know some of you will be able to relate.  If you have anything you'd like to share about it, I would welcome your version of this fibrofog.  (Hint: Click "Comments" below and tell me I'm not alone on this!)

Tuesday, October 20, 2009

I Missed You Last Night, Ambien

I pulled a fibrofog and forgot to take my half pill of Ambien (Zolpidem) last night.  It's the first time I've forgotten to take it in a long time - maybe EVER, since I started taking it.  What a shitty night I had.  I must have woken up about a thousand times.  I did dream some crazy stuff (very detailed, as usual) so I know I got some sleep, but it was such a long night.

I sure did miss my Ambien last night.  Never again will I forget!

Thursday, October 15, 2009

Another Diagnosis: Sacroiliitis

I met with my fibro doctor last Tuesday.  Luckily, I had the forethought to try to jot things to discuss down on paper, starting a week or so before my appointment.  I had a whole page of topics!  Here's a wrap-up of the major points we covered.

I explained about my hip and lower back issues. The doctor diagnosed Sacroiliitis and gave me a special velcro belt that helps tighten the hips.  It feels good.  I am to wear it as long as it feels comfortable, to help align the sacroiliac joints.  He even measured my legs to see if they might be different sizes, which can lead to this problem, but they are the same length. He mentioned that Sacroiliitis can be a symptom of Ankylosing Spondylitis, but didn't seem too concerned at this point.  (I'm still concerned, but we'll see how it goes.)

I told him about my screaming left knee pain that comes on sometimes, especially in the evenings, while I'm just sitting on the couch.  He named it Patella C-something (I couldn't spell it - maybe this is it?) and said to avoid sitting on my leg or legs and to also avoid crossing my legs while I sit.  These are very hard on the knees, he says.  He also said skipping steps while going up stairs is really bad for that, too.  I definitely don't skip steps, but I noticed this week that I do try to cross my legs a lot while at work.  I've been stopping myself, now that I know it's bad for my knee.

I told him about my frequent presyncope (feeling faint) and how it happens when I change directions or speeds.  He was initially concerned about POTS, but he tested my resting blood pressure (which was normal - not low) and pulse before and after some mild exercises.  My resting pulse was somewhat high at 92, but the increase after activity seems normal. I can't remember exactly, but I think he attributed the high resting rate (and my sweating) to the Pristiq, and the Doxepin may have something to do with the dizziness and lightheadedness.  At any rate, he did not seem too worried about it after conducting the little test.  I guess I still don't know exactly what's going on with this.

Doxepin is the stuff I decreased from 2 capsules nightly to 1 capsule nightly, because I was getting a crazy sweet tooth and getting fat.  However, it should help me with pain, so he suggested I add increasing back to 2 for 5-7 days to my action items in my WRAP, especially if I notice I'm not getting sleep.  He also said I could increase it for worsening of pain, especially in the wintertime, when fibro tends to get worse.  I just need to be aware of the side effects and keep them in check.  I am currently making an effort to eat healthy foods and cut down on indulgent sweets.  I actually lost a couple pounds counting calories, last time I checked. 

He wasn't too worried about my using Tramadol for pain about once daily.  I have been taking it most days in the mornings, when I feel worst.  He says that's not a big deal.

I didn't realize it until it was too late, but I completely forgot to mention the crazy tinnitus going on in my left ear all the time.  Oh well, I'll jot it down for the next time.

I guess that's it for now.  I just wanted to write something down to help digest it all, and share it with you at the same time. :)

My next appt. is Tue. 12/22/09 @ 8:20am.

Monday, October 12, 2009

Husband in the Hospital

This past weekend was a harsh reminder that the other half of my little family - my husband Don - is also affected by a chronic, incurable, and serious health condition.  He has been diagnosed with Crohn's Disease for 16 years now. 

When I first met him about 8 years ago, his condition was somewhat stable and being well-managed with Remicade infusions every few months.  He would still go through cycles of feeling better, then worse as the drug wears off , but he has thus far been lucky enough not to have required any surgery to resection his intestines, as many Crohnies have.  (We both dread the day when that has to start.)

After a terrible night of vomiting and unusually excruciating pains, he told me Saturday morning that he "might have to go to the hospital".  Needless to say, I jumped into action and was ready to take him in a matter of minutes.  He couldn't even keep a sip of water down without throwing it back up in only a few minutes.  All signs pointed to an intestinal obstruction, which is serious business for anyone.  I took him to the ER Saturday morning.  After the usual tests and waiting around for hours, the ER doctor recommended he be admitted, so he was moved to a different room and stayed overnight.

The obstruction does not seem to have resolved itself as of yet, but at least he can eat without vomiting and the pain is not as awful as it was before.  Treatment, per his own gastrointestinal specialist, is to try to reduce the inflammation to help open up a likely narrowed portion of small intestine with an antibiotic.  He was on liquids only Saturday through Sunday morning, but is now temporarily on a low-residue diet until this obstruction resolves.

The entire time was in the hospital, poor Don was worried about my health and comfort.  ♥ 

But my health came second to his during this time of emergency.  I didn't care about my needs - I just wanted to make sure he was okay and had some company during this scary time.  I skipped breakfast and my daily supplements and stretches Saturday morning, and was doting on him as he lay in the hospital bed, sometimes putting myself in awkward positions or standing for a long time.  I would tend to my own needs later.  I am surprised to notice, however, that despite my own neglect, my left hip didn't feel bad at all, I wasn't noticing much dizziness or fibrofog, and I hardly noticed any of my usual pains and problems.  I think my body responded to the emergency to graciously allow me to focus my attention on what I decided mattered most at the time.  I suspect the problems were there, but I didn't allow them the attention they usually get because I was determined to help my husband in any way I could.

As expected, today, I notice a heap of exhaustion, plenty of moments of presyncope (dozens of episodes already this morning) and more pains in my hip, back, and legs.  It was interesting, though, to notice that my pains and fatigue temporarily subsided during a time of crisis.  I wonder if I can tap into that need again - perhaps the next time I'm having my own crisis of extreme pains. 

Have any of you noticed that your Fibromyalgia symptoms subside during emergencies or special circumstances, despite any added stress?  Have you ever been able to control your symptoms when they reach crisis levels, by using some mental technique?  I'd love to read your experiences.

Thursday, October 8, 2009


I know I'm having a bad day when my usually (somewhat) polite demeanor changes to inconsolable bitch.  One of the nicest people who knows I have a chronic pain condition asked me if I'm having a good or bad day and I just rudely retorted in despair.  This is my cue that I'm having a bad day.  I must consult my WRAP and see what to do...

I regret snapping at this person.  This is someone who is actually concerned for my well-being and I returned the favor by barking back with my discontent.  She deserves better. 

I'm sorry if you have ever been, or will ever be, the victim of my irritable mood.  Fibromyalgia is partially to blame, but I also take responsibility for not being aware in time to stop it from happening.  I will strive to do a better job of recognizing my lousy mood and try to prevent it from sucking you into the pain pit with me.  It doesn't help to have us both in there, and I know you'd help me out if you could.  Thank you for taking an interest in me.  I appreciate it.

Wednesday, October 7, 2009

New Table Dressings

I'm a bit bored with the look of my blog and am currently shopping around for and brainstorming new design ideas.

Stay tuned for a new look here in the coming weeks...

Sunday, October 4, 2009

Little Victories

I vacuumed today.  That's right - me.  It wasn't the whole house, but I managed to do the entire top floor of my house.  This is a big deal for me.  I smiled while doing it and even caught myself cheering a few times.
"Yay, I'm vacuuming!"

Vacuuming is a task that I avoid most days, because it is so taxing on my entire body.  Fibromyalgia leaves me weak, fatigued, and in pain all the time.

I expect a bit of a flare up after today's exertions, but I'm very, very pleased to be in a cleaner living space.  This is one of those things that I deem to be worth a flare.  It makes me feel a little better to know that I was able to perform this task - to overcome this challenge - and enjoy the results.

With my husband and I both dealing with chronic conditions (he has Crohn's Disease), we have been reduced to living in what we call "squalette" (not quite squalor, but reminiscent of it) for many months.  In fact, the vacuum cleaner has been upstairs and waiting for use for several weeks now.  It's been a nagging reminder of a chore that must eventually get done.  I'd resolved to be the one to do the vacuuming this time. 

Finally, today, I had my chance at noon.  I'd just gotten past my morning stiffness and pains, so I took action (before I'd change my mind).  Now I'm enjoying the cleanliness (while it lasts) and the calm before the storm (flare).

Ta-da! :)

Do you have a little victory you'd like to share?