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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, December 20, 2013

Friday Tidbits: What Is My BP Trying To Tell ME?

Sometimes moms are guilty as well when it comes to listening.  This was no happy camper! 

Yesterday I finally made it to my GI appointment and I'm on Cloud 9.  You may not think going to see a doctor is remarkable but consider this: since 2009 I've made many appointments which I've had to cancel at the last minute, all because I was too ill from my CFIDS/ME/CFS and fibromyalgia. This is the first time I've been able to see my GI in his actual office. (Baby steps!)

So, hallelujah!  It was almost a miracle that I got there.  I won't even mention the melt-down I had as I was getting ready.  Nor the shaking on the outside, shivering on the inside. That I fell a few times. That I dropped many things - because of the shakes.  Or that I ended up with cuts in various places because of the shaking, shivering and weakness. That I couldn't stop the sweat rolling off my head and other parts. That getting dressed was more of an ordeal than the usual: my arm has a rotator cuff injury so I can't do simple things like put on a bra. Hubs was having such a hard time getting me hooked in that I finally yelled (yes, I admit I yelled): "you must be the only male in the world who can't get a bra on a woman."  Hmmm.  Maybe that only applies to getting off a bra and not getting one closed.  I may have to rethink that remark! ;)

Continuing: I couldn't control putting on my eyeliner.  My vision, which is so iffy, was so bad that I had trouble connecting the eyeliner with the place it's supposed to go. (The vision problem is that the eyes aren't getting the right signals from my brain, the pitocin problem.) 

My skin has many problems such as rashes and hives but almost never zits?  Well, when I got home I found quite a few zits.  My rheumy tells me that it's because of the stress of getting ready for the outside world, just overdoing it, which produced those ugly suckers.  But you don't want to know all those gory details as I pushed and pushed myself to try to get out the door.  Right?  So I'll spare you. (That's me being tongue-in-cheek, folks! I just told you most of it, I know.)

So, getting back to the appointment.  It was good but it could have been better. Don't get me wrong, I really like my GI.  However, I don't think that 15-20 minutes (tops) is enough to discuss what I've got going on with me, my very complicated and long-term problems.  And it's further frustrating because this doctor, who's been in practice for over 30 years, repeated for the nth time that he'd never seen such a bad case of impaction, occupying my entire colon which we fought during that 10-day hospitalization in late October.  The impaction he could spend a few minutes on but not address some of my concerns and observations which I feel are needed in order to get to the root of the GI aspects of my health.  We're over the impaction and need to move on.  Yes, it's great to have validation that I was in a situation that DID need a pretty long hospitalization (hear that ER???) and to know that hubs and I were right to use all our wherewithal to get me admitted by the ER. (For that incredible incompetence/neglect/unprofessionalism, see links here and here and a whole lot of other places in this blog, of late.)

But yesterday was a bit of a wake-up call.  I've finally figured out one of the things that has me concerned.

For decades I've had extremely low, verging on dangerously low, blood pressure.  In fact - and I know this is a bit mean, forgive me - but each time a new nurse at my GP's office would take my BP, I wouldn't warn the nurse that I have low BP.  Each time the nurse would have to take the BP measurement again and again until hubs and I would burst into laughter telling the poor soul which numbers she should head towards.  Hey, we get our jollies where we can!  

Just as each member in my family has something about me that's a "tell" as to how bad I am on any particular day - hub's is the color of my lips: no color or blue - my "tell" to myself is my BP.  If my BP is high (and hubs is experienced in taking BPs) I know that I'm really sick and I try to stay in bed, emphasis on "try."

Before going on, yes, I do understand that the BP is only one part of a complete picture and that everyone has their own unique BP numbers.  However, before I became really sick, my normal BP was always 120/80, a very good BP level.  

I also have orthostatic intolerance, which adds to the danger of the low BP.  Typically, in bed my BP is 90/70. I sit up and it goes down to 80/60.  I stand up and it drops to 70/50-55.  My low BP is one of the contributing factors to my falls.  It's also a contributing factor to why I can't do things.  For example, it's been years since I've been able to take a shower, I have to bathe in a tub.  I can't stand anywhere, I have to be seated.  I can't eat at a table, I have to eat in bed.  You get the picture.

All too often, going to go see my GP is really strenuous.  (Understatement.)  I'm in too much pain, I'm miserable because I haven't slept in 24-72 hours.  I have a monster migraine or I'm simply too weak, I'm "fragile" (I hate that word!) and so on.  By the time I get to my GP's office, on those really bad days, my BP will "skyrocket" to the 120's.  For me that's validation: I'm not being lazy, I'm sick.  Yes, lazy.  It's one of the Achilles Heels I live with.  I fear being lazy. (Hence so many home accidents, falls, etc. And scarier is that I do have a moment of being unconscious.)

Furthermore, with my BP in the 120's, I know that I really have to try to stop doing the little projects that I give myself so I don't go stark raving mad from boredom and inactivity - or to distract myself enough to ignore the awful pain.  However, if I don't stay in bed here are just a few of the weird things that have happened to me.  Believe me, these are just a few of the examples: 

  • I really wanted a cup of tea but hubs, on this particular day, had given me a warning not to get out of bed.  After a few hours, I couldn't stand it and went down to the kitchen.  As I opened the cabinet, a mini-Cuisinart fell down and its sharp blade cut my forehead.  (OMG: 10+ years later it now occurs to me how it could have been an eye that got hit. Gulp!)  You know head wounds: blood was all over the place.  Despite that, I was way too sick to go to the ER for stitches, even with an ambulance.  Had the house been burning down, honestly, I wouldn't have been able to get myself out of bed.  An aside: for months people would tell me (especially doctors) that I would have a nasty scar across that valuable piece of real estate.  This was before my body stopped making (adult) human growth hormone and I was always freakishly lucky not to scar.  That, along with a bit of lavender essential oil, left no scar whatsoever on my forehead.
  • One Thanksgiving: I was feeling weak and shaky from having cooked and baked since the weekend and hubs was insisting I get to bed.  However, I didn't want the "Pillsbury" Thanksgiving/Christmas Eve/ Christmas Day/New Year's Eve and Easter dinners my poor husband tries to do. (He means well and it's not his fault that he lacks the cooking and baking gene, but....) We were down to our last couple of hours before the actual dinner, which we all know is the most frantic part of any festive/over-the-top meal.  "Just let me finish this!" "No, go to bed NOW!" was said quite a few times. Without thinking, I picked out the blade in the regular-size Cuisinart - and sliced the tip of my thumb extremely deeply.  When, after 10 minutes it wouldn't stop bleeding, despite elevating my arm above my head, I had to go to the ER.  Yet another Thanksgiving to remember!
  • One more of the many incidents and I'll put you out of your misery. OK, two.  I got out of bed to go to the bathroom and in "coming to," was surprised to find myself on the floor.  On top of me was a wicker tray with stand and a wing chair.
  • BEST: in the bathroom I passed out.  You know the principle: A body at rest stays at rest, a body in motion stays in motion.  As I passed out, my arm went into the toilet down to the bottom, my head ricocheted off the toilet paper holder (breaking the holder), continued to ricocheting by hitting my shoulder hard on the sharp edge of the bathtub, ending up bouncing my head off the hard corner of my vanity.  
So BP has become a huge motivator in getting into bed and "resting."  

Last year I declared war on my health.  Oh, I've been at war to get my health back for decades, but this wasn't just war I'd now declared.  I now wanted a nuclear war declared on whatever is making me so sick and the accelerated speed at which I'm deteriorating - and losing body parts!  There aren't too many spare parts left after all.

Instead, I had another whopper of a year in terms of how much time I spent in the hospital.  Luckily, I didn't break any records, mainly the one year when I'd spent more days in the hospital than I had at home.  But this year has been close to a record-breaker.  

Getting back to the GI appointment.  My BP registered at 150/90 (if I have the diastolic right).  Hubs and I have a game where we try to predict what my BP will be, based on how many melt-downs I had in getting ready, how often I had to sit in order to prevent passing out, how much I'm shaking and all that jazz.

Boy, were we wrong.  We'd thought it would be the high 20's.

And that's what is bothering me.  Lately my BP has been too high, even breaking records with numbers such as 192/104.  That's not good for anyone, but especially someone whose BP is often 70/55. 

I don't want to put a band aid on the high BP by taking medication that will lower it.  I want to get to the bottom of why it is that suddenly the 150's are coming in regularly and that I keep breaking my BP records, that I'm into new, disturbing numbers now on the other side of the pendulum. 

What the heck is/are the problem(s)?  We're still on the "Hunt For Red October," where I was over a year ago. And how can this problem be resolved when doctors don't spend enough time with you in order to try to figure out what the underlying problem(s) is/are, nor communicating with your other doctors (as they did back in the day!) to figure out what is going on?

At any rate, I'm scheduled for a colonoscopy in early January.  And I came away from the appointment with information on the colon which I didn't have before.  I'll describe those tidbits in a future post. 

In the meantime, I hope everyone's doing their very best - only better!  Happy Holidays!  Ciao and paka.

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  1. Oh Irene you really are having it tough amazing how you always come back fighting you are one tough cookie. That's the problem no one talks too anyone and when they do it's all tosh no one know how to help when so complex well you would hope they would spend time with you to get you sorted out tha'ts what docs are for that's why they went into the profession to help wasn't it!

    Love and Hugs Irene xxxxxx

    1. Thanks, Sophie. You know how it is, all too well. I hope you and your family have a lovely Christmas and the boys can enjoy themselves. Hugs! xx

  2. Bra tip: Put the bra on around your waist. Close the hooks at belly button height with the cup parts on your back. Then twist it around so the correct side is in front. Put arms through straps and pull up. ( or let husband pull up if shoulder objects ). Much faster and easier than trying to close it in the back.

    1. Great tip. Thanks for bringing that up! xx