About me.

[Part of an "about me" for a support group]

I do what I'm able to as a homemaker and full-time mother.  I am grateful that I am able to do this, as being a full-time mother is what I always wanted.  Now there is no way I'd be able to work outside the home.  Thankfully our kids are wonderful and between them and hubs they fill in the massive gaps I cannot manage.  They worry more about getting me well than about me accomplishing things, which is wonderful until I feel like nothing but a lump on a log!

My daily companions are: Fibromyalgia :)  Raynaud's Syndrome, chronic migraines, bursitis and tendinitis throughout joints, dequervane's syndrome, dysmotility throughout digestive system, dysphagia, hiatal hernia, schatziki's rings, eosinophilic esophagitis, reflux, chronic gastritis, periodic gastric emptying issues, interstitial cystitis, chronic fatigue syndrome, ibs-c, social / generalized anxiety disorders, hereditary and situational depression, asthma, severe muscle tension dysphonia, euthyroid hypothyroidism....  I'm sure I missed some sort of chronic hangnail condition ;)

I joined groups to find support and to understand what other people with the same / similar issues are dealing with and ways they manage it.  I've tried a lot of things over the years and found some things that help, some that don't, and a lot that didnt' seem worth the effort for my situation.  It's a daily battle, as you all know, and I needed to see people who knew the battleground.

I have enjoyed reading, crafts of all sorts (jewelry making, bow making, sewing - professionally, just about everything!), music (I play oboe in a community symphony, despite the pain), a few online computer games (none of the big ones, just a couple of simple little ones hubs and I play together), tons of photography (zoom lens has become my legs!), digital scrapbooking, I used to dance -- from the about ages 8-21 I was taking at least one dance class almost all the time: ballet, modern, jazz, tap, character, social...  fostering kittens is a wonderful hobby our family has enjoyed together.  It has been really hard to lose so many favorite hobbies to pain and loss of strength in my hands.  A couple of hobbies I stick with just to retain some sense of "self" and enjoyment.

I like a wide variety of foods, though I developed a number of allergies during my 3rd pregnancy.  I actually love fresh fruits and vegetables, though there are where my allergies showed up!  This afternoon we went to lunch at a Peruvian restaurant and I had a dish on fettucini noodles with beef, chicken, shrimp, tomato, onion, and a special soy sauce.  Yummy!  I also love Chinese foods, Mexican, French, Classic American -- all regions...... I'm quite easy to please gastronomically, lol.  My most notable loves are chocolate, Dr Pepper (yeah, I've trialed no sugar, no caffeine, made no difference to my pain, so I cling to the little comforts), and popcorn.  Hubs loves going to the movies, and I go to be with him and for the concessions!

Serious pet peeve is mouth noises!  I cannot stand saliva sounds from people randomly playing with their tongues, or especially while eating.  I have to have some background noise during meals or I go crazy!  My kids will either go insane or be the most polite stealth-eaters ever ;)  I also have some definite OCD issues that have weird triggers -- like the bed sheets not being even enough or pricking a finger on one hand but not "evenly" on the other.

I think I've already given away most of my interesting things!  We have 4 cats now and have fostered a dozen or so kittens over the last year (two of our cats are "foster failures" that we took in as kittens intending someone else to adopt them, then we gave in, lol).
I am currently on a waffle iron craze.  I've cooked tater tots, grilled sandwiches, cake and brownies, and a few other things in the last week in the Belgian waffle maker I got for Christmas.  Yes, it's totally random, but I've gotten a real kick out of it.  Besides, I can set up the waffle iron next to my comfy chair and do the work where I'm a little more comfortable!
I am currently learning more about photography and love taking pictures, particularly candids at gatherings, or pics of children.  I most often photograph my daughters, of course, and also my younger brother's kids since they're near-by, cute, and willing to submit, lol.  Also, my sister-in-law loves the pictures, so it feels rewarding.
Bonus: I LOVE books.  I probably go through 3-6 books each week.  Most of them are audiobooks I listen to throughout the day, especially while the kids are at school, though I also read a lot of ebooks while soaking in the tub or trying to relax to get to sleep.

Get Moving

You know that crazy lady crying at the gym?  Yeah, that was me today.

Hubs' company just moved and their new office is two doors down from a gym.  His boss offered to pay for gym memberships for the employees and spouses.  The gym is starting a Biggest Loser contest and they're all going to be working on it as a team.  Sounds great -- they'll have personal trainers and dietitians.

Hubs and I started walking by ourselves through to look at the equipment at the gym.  We went into the cardio-theater (dark room with huge projection screen and a ton of bikes / ellipticals / treadmills, etc.) and I just started crying.  In the end hubs let me slip out and go wait in the cafe next door and pull myself back together while he let them know that we are going to wait on having me join.  Every time I have tried to start an exercise program I have become severely ill, which I now know is fibro related.  Just looking at those and knowing what it could do to me made me a mess.

Next week I am going to try out water aerobics.  The water sounds so soothing on my poor body.  And to top it off -- I'm joining a class specifically for senior citizens :)  So it should be low key, low impact, low stress.  I'll also be taking my mom along, so that will help me get all the way there and not putting it off so it never gets done.

My current goals:
     Sleep at least 8-9 hours per night
     Stretch every morning and evening
     Exercise one time each week (currently water aerobics)
     Eat eggs every morning.  (I gotta start somewhere on the nutrition thing!  and I'm terrible at eating breakfast.)

Taking risks? or just being conservative?

I am not offering any health advice to anybody.  

If you feel you are having a heart attack, call 911 and get help immediately.

This afternoon I was sitting happily in my comfy chair with my feet up when I had pain shoot up my neck along my arteries.  After a few seconds of pain I felt my whole chest move as my heart did a massive FLIP FLOP.  And that was it.  I felt fine.

I thought it was kind of funny and IM'ed Hubs about it.  Then my chest started hurting more.  The pain traveled up my neck to my jaw leaving me feeling like I was choking.  Shooting pain ran behind my left collar bone.  Then I got incredibly tired.

Pretty much anybody who knows anything about anything health related knows that chest pain, palpitations, shooting pain into the left shoulder / arm / up the neck, etc. means you're having a heart attack and you'd better call 911 now and get your affairs in order.

I didn't call 911.

I didn't rush to the ER.

I didn't really do much of anything.

I did check my heart rate, and I did stay in contact with Hubs who did call and talk to his sister who is an RN just to ask a few questions.  Hubs came home and finished his work day from the couch by me instead of from his office.  He felt my pulse which felt strong and regular.

I didn't die.

I doubt it was a cardiac event.

Here is my reasoning: Over the last several years I've had more than one incident of chest pain for different reasons.  I've been in the ER plenty of times "just to be safe".  Because of those things I have had pretty much every non-invasive cardiac test possible.

24 hour Holter monitor -- clear

EKGs (several) -- all but one clear.  The most recent one had a slight irregularity which resulted in...

Stress test with echo-cardiogram -- clear, and cleared the change in the previous EKG

Blood work to test for cardiac enzymes (a few times) -- all clear

Every time I end up being told that I'm fine and it's probably just an anxiety attack or a tummy ache (okay, they call it gastritis, but still!).    In my mind with all these things being normal and so many possible other causes for the pain I decided it wasn't worth the drama.  or huge expense.  I have no high risk indicators for heart disease.  My cholesterol and blood pressure have always been low and I have no history of heart disease in my family.

The on glitch in my reasoning is that I have had an unusual heart rate issue.  With the doctor we've decided that it's not worth looking into further right now because of all my cardiac exams that are negative.  My heart rate has run between 100 and 120 for probably 6 months now.  But at the same time I've also had high pain levels.  Over the last month or two I've found my heart rate easing down.  It's no longer been a surprise to find my heart rate below 100 bpm.  This evening, though, my heart rate has jumped back up between 120 and 130 while resting.  But anxiety over the pain is an easy enough explanation.

Let me clarify again:

• if I had risk factors for heart disease or heart attack I would have gone in immediately.
• if this was my first experience with inexplicable chest pain, I would have gone in.
• if I'd had a questionable test or lab result that was not later cleared, I would have gone in.

as it is, though, I'm tired of going in, and while they would have undoubtedly rushed me right back in the ER in case it was a cardiac event, I don't feel that the risk is high enough that I would be the best use of emergency resources.  I'm just not top risk or priority in this case.  And that's okay with me.

I feel your pain. No, really!

Last night Hubs and I got to go to an advanced showing of The Dark Night Rises.  I cried during the movie, but not at any scene you might expect.  There's a scene where a character is climbing out of a hospital bed, unhooking the IVs and monitors and rotating to put his legs over the bed and climbing off.  Yes, it made me cry.

Just the night before we were watching some TV shows and during one of the shows a character is shot in the leg, gets it stitched up, then  is hobbling around for the rest of the action scenes.  He's clearly never had a surgery before.  I kept being bugged by small movements he made that I know he wouldn't be doing if he had real stitches and a real injury.

I give up on my current medication regimen.  It's just not working.  My fibro pain has become so bad that the last few weeks every day I have reached a level of pain that completely consumes me.  The kind where I give up what I'm attempting to do and just sit with my eyes closed and try to emotionally climb back on top of the pain, like some sort of unseated King of the Mountain.  Sometimes it just takes a few moments to refocus and force myself to move on.  Sometimes I end up lying on the couch with my eyes squeezed shut praying to get through it.

My last time in the hospital (nearly 2 years ago) was for a particularly complex and scary surgery.  I was in the hospital for a full week and getting on and off the hospital bed was excruciating.  One of the most touching moments of a very scary time has to do with getting on and off a hospital bed.  The incisions in my belly made it exceedingly painful, even with an epidural, to use my abdominal muscles at all.  I had to take regular walks around the hallway of the surgical unit, and after the catheter was removed I had to also get up to use the bathroom.  My husband would come around and wrap his arms around me to pull me close to his chest, then lift me gently forward and help me rotate so I could stand up.  This way I didn't have to use my abdominal muscles so much.  When I got back in bed he again wrapped me in his arms and gently lay me back.  Every time we made this transition it also involved moving my IV stand, disconnecting and/or silencing the monitors and alarm, removing the nasal cannula, etc..

I wonder if perhaps I've got some form of PTSD.  As I typed that just now I intended it in a sarcastic sense... but thinking about it I suppose something along those lines may be possible.  I have been through extremely trying times emotionally and physically.  As my chronically pain has become more intense and constant I've been battling more difficult times.  I suppose now I'm coming to terms with the fact that therapy would be a good idea.  If only I could face another set of doctors appointments and another set of bills.  Food for thought I guess.

In the mean time, perhaps I'll try to avoid shows touching on medical topics.  When I feel the character's pain more literally than the actor doing the portrayal, it's time to make some changes.