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.

Don't Mind Me if I Pass Out

Several months ago I was at the doctor and my heart rate was rather high.  Enough that he said "wow, that's pretty high".  But that was also a time when I was in a great deal of pain and about to start on medications to manage my fibromyalgia.  So we decided the rapid pulse was due to pain and would take the "wait and see" approach.

We tried managing the pain (which is probably 70% managed.) but my heart rate is still resembling an excitable bunny rabbit. 

I'm tired of it.

My blood pressure, normally nice and low, has been having episodes of ridiculously low.  92/fifty-something just doesn't feel very good.  

The combination means that neither can be easily treated!  Treating my high heart rate (usually between 110 and 120) would be bad for my low blood pressure.  Treating my low blood pressure would be bad for my high heart rate!  So then we were going to wait and see if the infection I had at that point was the cause of them.

I decided to try a few studies on my own: is it the fault of allergy medications? caffeine intake? sugar intake?

Well, I haven't taken any allergy medication of any sort for weeks now.  I don't know how that may have affected my blood pressure (I don't have a cuff/scope) but my heart rate is still high.

I do drink Dr Pepper several times a week.  On Livestrong.com it reports that 

Normal [caffeine] consumption levels of a few coffees or sodas, about 250 mg a day, is considered safe and doesn't usually cause problems beyond jitteriness, restlessness and irritability.

32 ounces of Dr Pepper (more than I drink most days) contains about 112 mg of caffeine.  I do also love chocolate, be even a full Hershey's Special  Dark 31 mg. of caffeine.  Compared to a regular Hershey's Milk Chocolate bar which contains only 9 mg.  I hardly eat a whole chocolate bar every day.  Therefore on the HIGH end I MIGHT take in as much as 143 mg. of caffeine each day.  WELL below "normal consumption" levels.

I decided to track my heart rate for a day to see if I'm having spikes after eating or drinking certain things.  I even took an anxiety pill last night, in case anxiety issues were interfering.  I use an app on my phone to track my BP.  Looking over the timeline and notes, I have hit nearly 130 bpm a couple of times during the last 24 hours.  Once was at 2:30 am when I woke up for a short time in the night.  My lowest point was barely under 100bpm when I very first woke up this morning, before getting out of bed.  A banana split didn't cause a spike in heart rate.  32 oz. of Dr Pepper did not cause a spike.  As usual, my heart rate has mostly varied between 110-120.

Last week was a fun and busy week, and Saturday evening I was in a lot of pain and extremely cold.  I took a lortab, and got in a warm bath while drinking some Dr Pepper.  The combination of narcotics, temperature change, and soda did push me up just over 130.  Yes, I get periods of moderate to extreme diziness.  Yes, I get very tired (though I have so many triggers for fatigue who would I ever know?!?!?!).  Yes, I sometimes feel short of breath.  But what's a girl to do?

Drowning in Grief

Some sixteen years ago my sister was life flighted to a special hospital where she had an emergency c-section to deliver twin boys nearly 3 months early.  One of the boys was sent to the NICU.  The other was run across a passageway to the NICU in a specialty children's hospital.  About 20 hours later after a tiny nearly-impossible glitch in the life support system the sicker of the two boys passed away.

Nearly a year and a half ago my brother and his wife learned their daughter would likely not survive full term, but could die any day in her mother's womb.  Tearful story short, this girl was a fighter.  She did survive 4 more months to full term.  She survived delivery.  She lived for three days, then in the arms of her father and mother she passed away.

Several weeks ago a friend's nearly teenage daughter, in a fluke accident, was left brain damaged and sedated in an advanced PICU, hoping the swelling would go down.  A few days later and just two weeks before what would have been her 13th birthday, she passed away.

A couple of months ago through a blessed series of events my uncle discovered he had advanced pancreatic cancer.  His grown children, my cousins, watched and did all they could to support their failing father and soon to be widowed mother.  Less than a month after his diagnosis he passed away.

Several months ago my brother-in-law's father was diagnosed with advanced brain tumors.  The right medicine became available at the right time and they were hopeful for a little more time to have this husband, father, and grandfather around.  This also happens to be the father of my friend who lost her daughter so recently.  Not long after that young girls death it was discovered that there was nothing more to be done for her grandfather's tumors.  Two days ago he passed away.

Just this afternoon we learned that another family member's greatly hoped for pregnancy has ended in miscarriage.


It is true that I'm at least one step away from all these problems.  My daughters are all healthy.  My husband is healthy.  I'm not dying (which is about the best I can say).  My mom is healthy.  But I still mourn and grieve over these losses.  I can see people on every side of me hurting and wishing to be with these loved ones.  My heart hurts for them.  And at the same time I cling a little tighter to the ones that matter so much to me.

To those who are drowning in a lake of grief and emotional pain: I'm sorry.  I am so sorry you are going through this.  No, I do not know the same level of grief as you do. I do know a thing or two about drowning, though.  I send my love, my compassion, and my hope that you can find your feet to stand up above the grief that may seem to be drowning you today.

Drowning

Have you ever thought of what scares you most?

The thought of drowning has always been scary to me.

I do fine in water, enjoy swimming, and grew up canoeing down the Columbia River.  

I am not scared of water, I'm scared of drowning.

The thought of all the fight I can muster getting me nowhere.  

The thought of that moment when the body must reflexively gasp for air, but draw in the killing water instead.

That scares me.

Usually I've been able to handle my pain.  

Usually it goes up and down on a day-to-day basis.  

Since I started on various medications to manage symptoms I can usually go from day to day with hope.  

Hope that tomorrow will give me that breath of fresh air I need to at least make it to the next breath.

It has been so long now since my last breath of fresh air.

It has been so long now since I've had low enough levels of pain that I could push it to the back of my worries and enjoy something else today.

I feel like I'm drowning in pain.  

And that scares me.

You know the old saying "What doesn't kill you makes you stronger."

I've seen the following retort "I don't know if it's killing me or making me stronger."

I don't know.

What causes all this pain?

There are no definite answers for so many of my painful conditions.

What will ease this pain?

There is no single answer, and every individual who suffers must forge her or his own path.

I have tried one thing after another. 

Good diet?  I ate beautifully for three weeks.  Three of the most painful weeks I've lived.

Exercise?  Walking through the grocery store can put my legs in screaming pain.  Doing a yoga video ties my mid-back into knots.  Walking up and down the stairs too many times makes my knees scream in agony.  Doing a load of dishes often leaves me unable to raise my arms at all.

Therapy?  I don't have the emotional or financial reserves right now to spend another few hundred dollars a month of professional therapy.  I write.  I talk with others who are fighting.  I read and work through issues with purpose.  Having done some therapy in the past I'm doing the best I can to create self-therapy.  Not perfect, I know, but the best I can create at the moment.

Alternative Medicines?  I use essential oils to ease some pains.  I use yoga as possible to try to promote strength and length in my muscles.  I have not tried a chiropractor because I'm afraid of how bad it could be if it doesn't go well.  

One of my goals has been to avoid constant pain medications.  I do not want the worry of addiction.  I do not want to have to jump from pill to pill, or patch, or injection in order to keep my pain to a livable level.  

I am starting to wonder if I will have to give up this dream.  I have a few pain pills on hand for particularly bad times.  Usually I make it several weeks between doses.  I have had to resort to the pain medication just to be able to think straight.  After lying for hours last night wrapped in a heated blanket trying to warm up and relax enough to sleep I finally gave up.  As soon as the pain medicine kicked in I finally got a few hours of sleep.  until it wore off.

How bad can it really be?  You're making it up.  Just ignore it and it will go away.  It's all in your mind.  If you'd talk to a psychiatrist you'd be fine.  You just want attention.  You're lazy.  Maybe it's just depression.  You'd feel better taking fewer pills.  

I've either heard it, or thought it.  Probably both.  Yes, I worry about these things.  At some point, though, I have had to stop fighting that my body cannot do it all.  Acceptance has allowed me to make some changes that have given me some relief.  Fighting it just allowed more conflict and less peace.  

What if I'm drowning in a pool two inches deep?  That is one of my great worries.  All I can say is that I've swum as far as I can to find the edges.  I've lifted my head as high as I can.  I cannot find the top or the edges.

How much pain can drown you?  Last night if someone had assured me that if I ran around the block one time I would be forever healed, I could not have stood on my two feet to even open the door.  Even wanting it as strongly as I do, it is now beyond my physical capability.

I think I'm drowning.

If it wasn't for a hand here and a piece of flotsam there I'd long since be sunk.

It is time to seek a lifeboat.

Limits

The last few weeks have been busy.  Many wonderful things have been going on with my daughters finishing up their school year.  Many difficult things have been going on as well.  The busy schedule has kept me a little (or a lot) short on sleep and far too tense.  Therefore, there has been quite a bit of pain involved in recent weeks.

The best way to describe the pain I've been getting in my legs is this: it feels the way I suspect it would feel if each individual muscle fiber was being torn to shreds with burning hot pokers.  Times 10.  The only relief I could find involved a very long, very hot soak in the tub with essential oils, Dr Pepper, and chocolate cake.  The last two items are essential to emotional healing.

Earlier this week I helped out at Field Day at my girls' elementary school.  I had helpers for moving big things and thought I was doing really well with being cautious.  After the first 2 hours I was toast.  I occasionally bent to pick up a ball.  No running, no heavy lifting, no twisting or overextending.  It has taken most of the week to get past the severe leg pain.  NOT FAIR!  >Sorry, had to get that out of my system<


I've been working very slowly and gradually on reclaiming my kitchen.  When my legs are in that much agony I'm not awesome at doing healthy home cooked meals and washing the dishes.  One of the harsh realities of my life.  So now I'm trying to catch up.  Today I did two dishwasher loads of dishes and scrubbed a few dirty cookie sheets.  I've been working on trying to let my movements be more natural with less "guarding" of tender areas.  The idea in my head being that moving more naturally may help some joints feel better.

It backfired big time.  I cannot unload the dishwasher.  I cannot wipe the counter tops.  I cannot even move my right elbow from being glued to my side because of the agony in my shoulder.  The left arm is bad, but not as bad as the other.  It's like an angry wolverine trying to burrow in to my joints sending screaming shrieks of pain in every direction.

Ouch.

Seriously.  Ouch.

Now that summer is here I will be focusing on learning my limits.  I want to enjoy the time with my daughters.  I want to be able to play when WE're ready.  Acceptance is not easy.  I'm still fighting and I'm going to have to streamline my battle or I'm going to lose.

I'm so absolutely exhausted!  But as a quick note, I came across this article this morning and found it to be really informative.  So today is one for short words and a link:
http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain

A pain in the neck.

Following my double ear infection the extra antibiotics helped clear the way for thrush.  I fought it off (so I thought) and the coating disappeared from my tongue.  Soon, however, the pain returned.  My mouth felt scorched.  Then the throat pain started.

The throat pain started so abruptly I was worried at first that it was strep, but the fever never appeared.  I finally took a look at my throat in the mirror and was shocked by what I saw.  I had my tonsils removed a couple of years ago, but they would have been real beauties if they were still there!

My throat was covered in blisters, streaked with yellow (not drainage), and spiderwebbed with bright red patches.  Strangely the pain was least in the morning and got worse the more I ate and/or talked.  With as bad as things looked and quite uncomfortable of course, I went to the doctor today.

The verdict is: viral and/or yeast infection continuing down the throat.

On top of that, my hives are still showing up with any irritation of the skin (dermatographism).  So now I'm taking a few large doses of diflucan to balance out the yeast as well as a couple weeks worth of Singulair to try to get my histamine reaction back under control.

The frustrating news of this visit is that between my last visit two weeks ago and this visit my blood pressure has gone up considerably (still normal, but it is usually around 105/70 and was instead 125/85 or something along those lines).  My heart rate which has been high was over 120.  My weight was up 9 pounds.  NINE.  After a few days of barely eating because it is painful!  I believe this is a result of gastrointestinal laziness.  Take a girl with motility issues a muscle relaxer and surprise surprise: things stop moving effectively!  So I'm going to work on more walking, more fiber, and hopefully as things get moving again the excess weight and bloating will clear. In the mean time it was a very demotivating doctor's appointment.  *sigh*

A few of my favorite things

You know the saying "best thing since sliced bread"?  And along with that one "Necessity is the mother of invention".

When pain or illness keeps taking over your life, it's amazing the things you come to love better even than sliced bread, and the new ways you learn to use things around you to improve your situation.  Here are a few of those little joys for me, in no particular order:

smartphone

Whether it's fibro-fog or pill confusion or just plain exhaustion, it's easy to lose track of things.  Not only does the smartphone offer entertainments in any location, even for a child who has to tag along to yet another doctor's appointment, it can work as a second brain!  I have repeating alarms set to go off at particular points of the day so I don't mess up timing (wake up, send kids to catch the bus, don't forget lunch!, kindergarten bus,  early out day -- don't forget to be home in time,  etc.).  I use an app to track my heart rate, which tends to be rather high.  I keep my calendar agenda handy at the push of a button.  I have even used apps to track my pain levels, sleep patterns, pill reminders, etc.

heated car seat

Just recently we got a new mini-van (SO much easier and more comfortable to get in and out of than a sedan). One of the features included is heated seats.  That sounds like a lovely feature for a chilly morning, but it's also a great therapeutic feature no matter the weather!  The heated seat does warm my bum (not bad when IC leads to tender nethers) but it also heats my lower back.  Riding or driving in the van can be upgraded from "necessity" to "comfortable".  The newer, more ergonomic, setup of the seats is considerably more comfortable than our previous van, though it was only a few years older. 

jetted tub

I've always loved a good soak in a hot bath.  When we were finally purchasing a home for our family a jetted tub was a big selling point.  Even my husband enjoys a good soak in the tub!  People kept telling us that we'd never use it as much as we thought because they never did... but we're just tub people.  Even a year after moving in our jetted tub is used 3 or 4 times a week at least.  Often more!  

essential oils

I get soooo sick of taking pills.  Sometimes a little local relief is, well, a relief!  I have been learning how to use some essential oils where appropriate to ease pains or problems without taking more medicines.  Essential oils are strong, though, so you really do need to research and talk with your doctor so there are no unexpected complications.  

shellac nail polishes

I promise, not everything I enjoy has to do with highfalutin' big ticket item things!  I suppose this is kind of in that area as well.  Oh well.  When I was younger I loved having pretty fingernails.  I never had professional mani/pedis, but I've always dreamed of them.  As a mother and a dedicated tub-soaker fingernail polish tends to start peeling off within days or maybe even hours.  That just makes it not feel worth it to go through the work only to have it look a mess again!
A few months ago I discovered a product sold at WalMart.  It wasn't cheap initially (about $50) but if you've been budgeting professional mani/pedis this will quickly pay for itself.  It's a kit by SensatioNail that includes everythign to do your own shellac / gel nail color.  It took me a few times to figure out how to make it last, but now it stays put for up to two weeks without ever looking like a mess.  It even includes the LED curing light which means there's no dry time.  Nothing like painting your nails and suddenly realizing you need to pee!  This is simply a fun way to feel like I"m pampering myself.

foil baking pans

Several months ago I started working on improving our family meals.  It just isn't reasonable to expect my body to handle perfect Cleaver Family meals every evening.  So I started making meals for the freezer.  Using foil baking pans I can make double or triple of  a recipe one night and put all but the one we're going to eat that night in the freezer.  Then on a flare day I can send one of the daughters or the hubs to put one of the freezer meals in the oven and still enjoy the nutritional and emotional benefits of a home-cooked meal without putting my body through more than it is ready to deal with. 

pill cutter / sorter box

These two inexpensive items have done more for accuracy in medication dosage than any other gizmo or technique.  How many afternoons have I suddenly wondered whether I remembered to take my morning pills and risked either skipping a dose or double dosing.  With a pill sorter I am able to put the right number of the right pills in the right box.  If I cannot remember whether I took them or not it is as simple as pulling the pill sorter out of the cupboard and checking if the correct box is full or empty.  

There are also a few pills that I have to or can take a half dose of.  Not all pills are easy to split though!  I pain a couple of dollars for a little pill cutter which has made my dosing much easier with no crushed or inaccurately split pills.  

A couple of tips for pill sorting: if you organize your pills once a week that gives you a chance to see what pills need to be refilled before the next sorting day.  Request refills RIGHT THEN so you don't forget!  I use Walgreen's Pharmacy and have their app on my smartphone.  I can scan the barcode on the side of the bottle and request a refill without having to do anything fancy or complicated.  When the prescriptions are filled I can then go through the drive-though to pick up the new bottles.  I also have changed from one pill sorter with boxes for "am" and "pm" each day to that sorter plus another one which has a locking system.  The large one carries my morning pills and the pills I can take if needed in the afternoon.  It lives in a handy out-of-children's-reach shelf in the kitchen so it is convenient when I remember first thing in the morning.  The locking box keeps my nighttime pills in a handy drawer in my bedroom.  Several times I accidentally took my nighttime pills in the morning or vice-versa.  The number of pills was similar enough that I didn't notice until I was either super tired all day or super awake all night!  Keeping the pills in separate rooms keeps me from mistaking them again.  

What little joys have you found that helps make your life a bit easier or more comfortable?

Stressed Enough?

Remember that EKG I had done a few days ago?  Well this morning was the scheduled cardiac stress test to follow up on the irregular EKG.  It seems like insult onto injury that the early morning test HAD to happen right after the Daylight Savings Time switch :P

I had contrast injected then a echo-cardiogram done to see how my heart was dancing around in there.  Then I was taken to the dreaded treadmill room.  I really should have talked to them about using my inhaler!  After having half dozen or so electrodes were attached to my chest in various places we ended up waiting for a doctor to come supervise.  To fill time the tech showed me the EKG readings that were abnormal both a few days ago and still (to a slightly lesser degree) this morning. (Which I appreciated because I like to know what's going on).  Basically, the t-wave is slightly inverted.  This can mean that there is a portion of the heart that is not working adequately.  The question was whether stressing the heart would fix the inversion or make it worse.

It took me 7 1/2 minutes on the treadmill to hit 90% max heart rate (a perfectly average time, I was glad to know).  From a cursory glance the doc said it looked okay.  In women, however, 30% of cases slip through the EKG with stress, so after I lay down for a while and decided I was not going to actually throw up (I *really* should have had my inhaler!) I was put through the echo machine again.  

I haven't heard back yet, so I assume everything is fine.  Apparently an inverted t-wave can be normal for some people (though it never has been on past EKGs of mine).  No news is good news at this point.  Since I have no risk factors for heart disease it is very unlikely that there will be any further problems.  We just need to makes sure they're all ruled out.  Preliminary results should be available tomorrow or the next day with finalization in a week or so (which apparently is the difference between a doctor finishing the paperwork or not).

The really obnoxious part has been the remainder of today.  Stumping along at increasing speeds and inclines with fibro that is only managing gentle stretching right now was not particularly pleasant.  My heart rate, which has been pretty high as a general rule lately, has been crazy high the rest of today.  It has been above 125 each time I checked.  (I checked because I was pretty sure my heart was going to pound out of my chest!).  Along with this is shoulder aches, chest tightness, neck pain, etc.  Since none of it started until well after the test I assume it's just my body's reaction to stress and not just my heart's reaction to the stress.  I am treating it as an anxiety attack and a flare and waiting to hear back.

I do realize that calling and talking to the doctor may have been a clever move with these symptoms, but I tried and they ticked me off. :P  I just wanted to ask what side effects the two contrasts they used on me may have and if they may be causing or encouraging this tightness and pain (which kept me half the afternoon in a hot bath).  The person who answered the phone said she'd have to ask a nurse and put me on hold.  After a few minutes the line rang through again, as it does, but after listening to the phone ring for 8 more minutes I gave up and decided I wasn't dead yet and truly didn't believe myself to be in any risk of being so at any time soon.

SO there's my experience with a cardiac stress test.  I expect to be told that I'm just "abnormal" with a little divot in my t-wave.  I suppose I just like to be unique!

Dear Family Member,

**I had a wonderful bit of a discussion with a family member who is just graduating with a Master's Degree in something that leads to psycho....something or other (I never can keep those things straight.  Basically he'll be a therapist as I understand it.) It was a short chat that was interrupted.  He was (understandably) concerned about the number of medications I'm on and how the side effects may be making the issues worse.  Since he only ever sees snippets of my life through facebook statuses, text messages, or family email it is easy to only see the handful of colorful pills and not understand the day-to-day grind behind my health choices.**

We were having a discussion that got interrupted, but I wanted to clarify a few things since they're things I deal with every day and in your field you're bound to run into people like me, and far too many are not able to find a therapist who understands. 

A better description of fibromyalgia is this: Think of the last time you had the flu and had those whole body aches and pains and couldn't stand to even be touched.  Now feel that pain 24/7 and set that pain as the low level and increase it from there.  Add in "fibro fog": think of when you wake up abruptly in the middle of the night and cannot align your thoughts or remember what you're doing.  Except make this pop up randomly and frequently throughout a normal day.  When I was still on Cymbalta and didn't have symptoms every day there were several times I got severe pain, usually when I was overtired.  The best one I can try to describe is the long-bone pain.  Consider if the long bones in  your leg had a vice at each end and twisted back and forth in opposite directions.  As long as I'm on the top dose of Savella and the muscle relaxants this pain is much less common, but I still get breakthrough pain on occasion which is why I have a couple of pain pills on hand.  When I know I can take something if I need to it's a lot easier to put it off for another hour or two.  I have kept pain/sleep journals for a while and discovered that getting 9 1/2 hours of sleep is ideal for my pain management.  If I get insufficient sleep my pain increases significantly which makes the pain worse which makes sleep harder, etc.  When I was diagnosed I was getting perhaps 3 hours of broken sleep at night because I was literally in too much pain to sleep.  Now that I get better sleep at night I'm much better able to be awake and "with it" during the day.  

 Fibromyalgia and Interstitial Cystitis are both known as "invisible" diseases.  Each is typically diagnosed after eliminating all other options so it is not uncommon to go through months or years of tests, flares, and mystery before finding a diagnosis.  Just having a diagnosis is only part of the solution.  Symptoms can vary widely, and no two people respond exactly the same to treatments.  When you take all this into consideration I expect you can anticipate the emotional issues that come along with these problems.  These issues are not widely known but can be completely debilitating which means that many people end up without the emotional support necessary to go through this process.  It is really easy to second guess yourself and wonder if snide remarks about laziness or weakness are right and it's all your fault for being sick.  I'm extremely grateful that I've had [Hubs] to get me through these things.  His mom dealt with fibromyalgia for decades before there were even any treatments for it and he has seen how much pain and exhaustion comes with it.  I have fallen apart many many times frustrated that maybe it's my "fault" that I'm in so much pain and have so little energy.  I cannot imagine how it would be to go through this with someone who doesn't understand.  It has taken me many years just to learn to accept my body!

I was able to go through the first few years of IC without daily treatment.  The long term antibiotics and 3x daily numbing pills are a recent addition and I hope to be off the antibiotics in a few months and hopefully soon taper the numbing meds off to only during flares.  I just have to get my flares back down to where they were a couple of months ago.  Usually I am able to manage my IC flares with relaxation techniques and hot baths.  The inflammation can spread through not only the bladder, but the entire pelvic area and urinary tract.  I've had pain in my right flank for several weeks now.  It's not another kidney stone (they checked, since I have a history of those too), but is pain from the IC.  The lining of my bladder sloughs off and leaves me passing fragments of tissue and blood.  It is all the "fun" of a severe bladder infection and more, but without a simple remedy.

 Even people without family history or previous history of anxiety and depression very commonly end up with one or both in dealing with chronic illness, particularly invisible illnesses.  Nobody is going to look at [a family member with Chrones Disease] and expect him to just "man up" or "get over it".  Nobody is going to look at someone with a broken leg or strep throat and expect them to "think" themselves better.  (I'm not saying this is what you have ever said, but this is not an unusual attitude to face).  It's one thing when you can show test results, imaging results, scars, or familiar diagnosis and someone can understand, at least intellectually, what is going on with your body.  It's quite another thing when all they see is someone who has gone through tests, doctor's appointments, a variety of familiar and unfamiliar medications and still have no answer.  The easiest answer at that point is to assume that the person who "can't do anything" must be making it up, doesn't really want to get better, or just likes the attention.  Naturally this simply increases the guilt and worry of the person who is already sick which just makes it worse.

 My personal issues with anxiety are very much geared toward social anxiety.  My body reacts to many social situations with a full fight/flight/flee physical reaction.  The good therapist I worked with for a while those several years ago gave me a lot of information and techniques which have given me a foundation to build on in dealing with my anxiety issues.  One irony of social anxiety is that while therapy can be helpful it is also extremely difficult to seek and follow through with because it is putting yourself in the most vulnerable situation you can imagine.  I have attempted to work with a couple of other therapists over the years and they were terrible.  I'm sure everything they did was by the book, but for one thing it *felt* like it was by the book.  They did not listen to what I already understood and started at square 1 with a sort of arrogance that just got my back up.  One in particular was so set on walking me through the analysis of the likelihood of a worst case scenario happening that he left me with no confidence in my ability to deal with the dreaded scenario.  When everything went wrong the first thing I wanted to do was rub his nose in the fact that what I had worried about HAD happened (despite the unlikelihood) and he was wrong.  I never went back there.  For me, the computer offers a buffer and makes it much easier for me to deal with social situations.  I have time to think about what I'm really trying to say, an opportunity to re-read and take back words before they're even shared.  It has also given me an opportunity to connect with people who DO understand about these unusual health issues I have been dealing with for so many years.  I have been able to broaden my social interaction a great deal over the last few years.  

One book I read that has helped me a great deal is actually a parenting book.  Most of our sisters / sis in laws have read it too.  It's called "Raising your Spirited Child".  It has some great information on parenting, but I found a lot of insights into myself though reading the book as well.  One other thing I picked up that made sense to me is the discussion of people who are particularly susceptible to the emotions around them.  Once I put myself into the shoes the author wrote about I could see how well this applies to me.  On one hand it makes me a very effective teacher and group leader.  I am able to pick up on the mood of the group and the needs of specific individuals much faster and more easily than most people.  It was something that was often remarked on when I was going through my teaching practicum.  On the other hand, this means that any sort of uncomfortable situation sticks to me like glue.  I seem to gather up guilt, fear, and other negative emotions and feel them all myself, even when it is someone else who is going through them.  No wonder I get so uncomfortable in social situations!  Understanding how my body is processing reactions is helping me to deal with them and learn to be more effective.  

Over a year ago I decided I needed to be more positive about my physical health.  I figured I was being negative and focusing too much on what was not working right.  I made a goal to keep track of every day that passed without pain.  I figured in this way even when I was in pain I could look at a cup and stones or some other little marker in it representing good days and appreciate that a better day must be coming.  That cup was never filled.  It was never even started.  I learned something very important which has allowed me to deal better with my health issues: I do not go a day without pain.  That's the honest truth.  Once I accepted that I fought it less.  I now appreciate the days when I am able to manage the pain on my own and still accomplish things.  I am grateful for the days I am not limited by extra medications.  I am grateful for the days when I keep track of everything I wanted to do without having to double check my calendar every hour.  I can hope that someday my pain will go away, but I no longer am expecting it or waiting to start something after the pain is gone.  I am learning to accommodate my pain as a part of daily life instead of expecting it to just stop.  If I think about it I can recognize that right now I've got pain in my neck, shoulders, mid-back, right flank, bladder, and an ache in my legs.  I'd say this is a "good" evening.  On the standard pain scale of 1-10 I'd rank myself at a 3 or 4 right now.  I don't have a day in memory that was below a 3.  Pain at level 5-6 for days on end is very common.   

I recognize that your recommendations that I take fewer medications and seek therapy over chemistry is well intended and honestly given.  I would love to be off my medications.  I am learning reasonable boundaries for my body, though, and that is not a reasonable goal in the shorter term.  It is a goal I hope to reach someday, but cannot be now.  I will likely never be off some of my medications, such as the acid blockers for example.  I have enough scarring, furrowing, and other mechanical issues with my esophagus that allowing acid to continue to damage it could be not only painful or uncomfortable, but dangerous as well.  The old adage that "when it rains, it pours" is very true with my health.  It is not surprising to end up with multiple problems at once.  It is a delicate balancing act to keep my body healthy.  As soon as one part is disturbed it throws off several other things as well.  Even in working to improve my health this is common.  I worked with a chiropractor / alternative medicine doctor for several months (I had to quit going when I broke my ankle) and he admitted that the sudden health issues that were popping up were likely because the things we were doing were strengthening my body to a point at which it could fight long term problems.  I have not been back since then because it is expensive, far away (well, half an hour), and keeping up with the various supplements was exhausting.  I do intend to eventually return to him or some similar doctor at some point because there were some good things I got out of it.  Similar to the therapist though, I learned some good basics which I continue to use to improve my overall health.  It isn't past and forgotten, but is still being used in my daily efforts to keep my body glued together.  I just have to prioritize my life on a case by case basis.  

Every time I go to any one of my doctors I pray before hand as hard as I know how.  I pray that I can accurately discuss the issues, that the doctors can understand what I mean, that together we can determine what the best course of action is, that we can work toward a long term goal of living as normal a life as possible.  I have seen the blessings of these prayers as I've researched to learn what is going on with my body.  There have been times that things have finally fallen into place and times when the diagnosis doesn't make sense as I look further into it.  There have been changes in how we address an issue and times we've decided to accept what is going on without intervening.  I put my health in the hands of the Lord and am grateful for the blessings of modern medicine as well as other techniques.

I have seen some incredible blessings through my health issues.  There is simply nothing like having your 7 year old daughter come to you in the morning, give you a gentle hug and a kiss and ask quite seriously how you are feeling.  My daughters have gained a level of compassion and tenderness that it incredible. They are more patient with me and my problems than I could ever have imagined.  I have also had the opportunity to help a variety of people who are dealing with health problems and don't know how to handle the situation.  I am grateful that my experiences can help others better understand their own or at least offer some comfort that their pain (physical and otherwise) is understood.

I apologize for this being very long.  There is a lot that goes on "behind the scenes" here about my health that nobody sees.  Once I was referred to an internist because so many things were suddenly wrong.  The doctor took one look at me, one look at my medications (this was probably 4 or 5 years ago) and declared that I looked too healthy to be on so many medicines and that I'd feel better if I went off them.  She never looked in my throat, ordered a test, read my files, or anything, just declared that i was "fine" and needed to quit being sick.  At this point I had just conquered a dangerous infection in the bone from an untreatable ear infection.  I had just slogged through a dangerous spike of depression and finally re-balanced my medications.   I had gone through Bell's Palsy and was on several medications to stop the infections I had going on.  I was referred to this doctor when I had started having severe chest pains with numbness and all those bad signs.  I was sure it wasn't cardiac and just reported to the doctor I was seeing (who was really mad at me for ignoring it) but to have this other doctor not look at a thing that was going on and declare me "healthy" without looking at what was really going on was a real slap in the face.  It is really difficult to face judgement from others when you know they don't have half an idea of what you're actually going through.  (I recognize that in your own way you and [your wife] know what I mean here).  

Even with my social anxieties I deal with situations best when I can lay it out and discuss it or look at it all in one place.  The support groups have helped me figure some problems out and have really helped keep my issues in perspective.  By no means do I have a worst case scenario in any of my health problems, I just have a lot of individual (though likely associated) issues that sit around like dominoes and all fall down when one gets wiggled too much.  I recently needed to vent about my health problems but was tired of misconceptions and other pressures.  As a result I started [this] blog.  I've been writing on it for several weeks now and it has given me a place to vent or rant about whatever I'm going through.  Nobody even has the blog address at this point, it's just a place where I can figure things out. I take my health seriously and address each issue from as many perspectives as I know how.  My body is unique and I am doing my very best to handle it responsibly.  I do have to admit, though, that I look forward to trying out a perfected version someday :)

There are so many people I know who are suffering from invisible "something".  Whether it's an unseen health problem, unseen family problem, unseen emotional problem, they desperately need help.  I believe you can be the sort of therapist who can approach these things with compassion and honesty.  I can tell you that it means a lot to simply be trusted and believed.  

I hope you get home safely to your family in the morning. ...You have a delightful family! Hug your babies for me!

Love,

Me

Don't want to hear it; Don't want to think it.

I happened upon this slideshow today.  As a woman with Fibromyalgia I have heard or thought...all of these I think.  Even if someone else isn't saying these things to me *I* am a great one for getting after myself.
"Top 10 Things Not to Say to a Fibromyalgia Patient" (via HealthCentral)

"Taking that many pills CAN'T be good for you."

This is not a new statement.  It's nothing I haven't heard many times.  It's not even something I haven't heard from myself!  But it frustrates me every time.  I work to not exhibit frustration because it's a statement that is most often spoken out of love.  Enter: person with "normal" health.  They hear about a myriad of health problems then see or hear of the ridiculous number of pills I am taking.  If pesticides on bananas are going to kill us, then those concentrated chemicals in bright little tablets and capsules are certainly up to no good.  Right?

I am 32 years old.  Today I took close to 25 individual pills/tablets/capsules (most shown here)

I promise you, I do not take these for my personal enjoyment.  In fact, it is not uncommon for me to have complications with taking pills.  With this many medications who knows what strange interactions you may get with a body that's already unique.  I very carefully track each medicine I take and keep a close eye out for contraindications or unhappy side effects, but this doesn't mean I may not stumble on some odd reaction anyway.

I have no desire to become dependent on medications.  I would love to wake up in the morning, eat breakfast, go through the day, and go to bed at a decent hour.  Instead I get up, take my pills, eat at least enough to get the pills down my throat and prevent nausea, go through the day until an alarm goes off (at least once in the day) on my phone to remind me that I have to take another dose of some medicine.  Come bedtime I have to swallow another handful of pills, make sure they all went down properly, manage the side effects, and finally fall asleep.  I'm tied to my medications!  I cannot stay overnight somewhere without my "portable pharmacy".  I have to keep several medications with me at nearly all times in case they become necessary so I do not have to ditch whatever I'm doing to get back to my medicine.

I hate them.

BUT at the same time, I am grateful for them.

I really hope that in even just a few months I'll be able to be taking significantly fewer medicines.  Once this inflammation clears up (please?!?!?!) I can cut out the steroids, the anti-anxiety meds to manage the side effects of the steroids.  In a couple of months I hope to be able to end the long term antibiotics for my bladder (if it will stay calmed down) and reduce the bladder numbing medication to just during the occasional flare.  I hope that sooner, rather than later, my fibromyalgia will be well enough managed that I can cut out the muscle relaxers, except during a flare.  I expect it is unlikely that I will be able to stop taking the daily medication to keep my fibro managed, though.

Even with those good-case scenarios, here's what I'm stuck with:
*acid blockers.  Even missing a couple of days of these (if I'm not on the ball enough when I run out) can lead to full flares in my stomach and esophagus.  My esophagus is so scarred and occasionally inflamed that the doctor is very limited in his options for dilating my esophagus if/when it becomes constricted again.  As is usual with my body, once a pain cycle begins (such as from missing my med a few days) it is very difficult to get it to calm down again.
*depression and anxiety medications.  Would it be nice to go without these hefty chemicals?  Heck yeah!  Could good therapy create enough change that it would be possible?  I suppose it could.  I know that some therapy would be useful to me and have even intended to return to it at some point.  Attending regular therapy is expensive, time consuming, and emotionally draining.  I do not know that I am currently in a solid enough place to manage that at this time.  It is something I may look into more closely at some point, but stopping my depression and anxiety meds in favor of using that money on a shrink isn't so simple as all that.  It is part of a long-term goal I have to gain those emotional tools to manage my D/A better.  In the mean time I use my hubs as a sounding board and talk things out with him OFTEN.  I also have created this little black hole of thoughts and feelings where I can think out loud and get things out where I can examine them at my leisure.

*thyroid meds.  This is a bit of a complexity.  My hypothyroidism is uncommonly diagnosed as "euthyroid hypothyroidism".  Basically this means that the blood tests claim my thyroid is functioning well but something is still wrong and treatment helps.  I have my thyroid levels checked annually and they are doing well.  I ran out of the meds once for a few days and could not believe the difference I get from being on this tiny dose of medicine.  Interestingly, I discovered recently that a rare side effect of the med I take for anxiety can cause the body to not handle thyroid stuff effectively, therefore causing the body to react as if in a hypothyroid state.  If I was ever to be able to get off anxiety meds, or perhaps even change them(?) I may be able to stop the thyroid medication.

*fibro meds.  As previously mentioned, I cannot at this point see how to manage my fibro without the assistance of medications.  Hopefully as my overall health improves I may be able to more effectively manage my fibro though exercise, diet, and perhaps supplements (I'll save my supplements +/- rant for another day).


Here is my plea:  PLEASE remember that every body is different.  I am happy to hear of suggestions, recommendations, thing that have worked for others, etc.  BUT please do not act like you know more about my body than I do.  I want to understand my body.  I want to know why it feels and reacts the way it does. I want to know what medicines, supplements, exercises, etc. do to my body.  I am the one living in this body.  I can better feel and recognize the changes that happen in my body than any amount of book learning or even personal experience can teach anybody else.  PLEASE trust me that I am doing my very best to make my way through life.  I have no desire to be a drugged up zombie, but I also am not willing to spend 80% of every day doing special therapy, exercises, bio-feedback, diet planning or whatever else just so I can spend that last sliver of my day without the need of chemical intervention.  I do believe that medicines wisely used can be a real help to us.  They can allow us to work at our own pace and ability to improve our lives.  Some may always be necessary for my body.  Some may be occasionally necessary.  Just know that I am doing my best.  When my body begins to break down in some way (such as an infection) everything falls apart.  That is true.  It is the nature of many of the problems I have.

This year has been a hallmark year for me medically.  I made it all the way to the month of March without an infection that required antibiotics.  I also made it all the way to March without any trips to the emergency room.  That is a wonderful thing for me!  As my body again begins to settle down I hope to make some other improvement in my life that may help me step towards chemical independence, but I am learning to accept my body as it is -- hives, allergies, infections and all.

It's a Mystery

Never assume you've reached rock bottom.  That's just a challenge to life to prove you wrong.  I didn't think I'd made such an assumption, but clearly I did something wrong!  Well, perhaps not.  Here's the deal:

My left arm started bugging me yesterday.  Not the same as my usual fibro pain or bursitis pain or pinched nerve pain... but not nice.  It's particularly difficult to describe, but here's the best I've come up with:
*that feeling when you fall asleep on your arm, wake up with it dead asleep, roll over and in a painful rush the blood refills the parched blood vessels.  Think of that painful rush lasting hours rather than seconds.
*the way I'd imagine an arm would feel if it was passing a kidney stone.  Can't hold it still, can't stand to move, trying to find some position that eases the pain.

My arm hurt when I was going to bed.  I took my normal handful of pills with omnicef instead of the dreaded amoxicillin and took another pair of benadryl.  I fell asleep quickly... and was awake again in 4 hours.  I figured the benadryl had worn off as I was itching again.  I took two more benadryl and fell back asleep.  Two hours later I was awake and knew that itching wasn't the problem.  My arm burned, throbbed, ached... it was not conducive to falling back to sleep.  I gave up and got out of bed thinking maybe I had just legitimately put my arm to sleep -- despite the fact that I was sleeping on my back.

After an hour and a half nothing could distract me enough to handle the pain.  It was now 5:30 am.  I woke up Hubs and asked him to just help me.  I couldn't handle the pain alone.  He sat up and talked to me for a while, and let me cry.  Then he convinced me to take a lortab (I take one rarely for fibromyalgia pain that prevents restful sleep).  I then got in a nice hot bath and he set his iPad up at the end of the tub and sat on the floor by me while we watched an episode of Agatha Christie's Hercule Poirot.  At the end of that hour of hot water and medication I was still in massive amounts of pain.  I hit the phone and arranged for some help from family while Hubs hopped through the shower and got dressed.  Then we dropped The Daughters off and headed to the emergency room.

Since I had severe pain in my left arm (and a blessedly slow weekday morning) I was taken straight back to a room. The unfortunate part is that it also happened to be right at shift change, so the doctors were not immediately available.  I did have an EKG pretty immediately, but had to wait ages for any pain management.  I was exceedingly grateful that the doctor took me seriously.  When injury or illness is not readily apparent I always worry that maybe they'll think it's all in my head.  Or what if it is all in my head?!?!  Of course I don't ever think it is, but....???

My EKG results were ready fairly quickly and apparently they were a bit "off" from a couple of previous EKG's I've had done (reflux or esophageal spasms cause chest pain and they automatically run all the tests to rule out cardiac involvement, so I've had it done before).  He said it wasn't alarming, but to be on the safe side he wanted to do the full cardiac workup.  I had a great deal of blood drawn and sent for labs, including checking cardiac enzyme levels.  I had a chest xray to rule out any enlargement or fluid around the heart.  I also had an ultrasound of my arm from the jawline to the wrist to rule out deep vein thrombosis (which is very rare in an arm).

I was allowed a dose of pain medication which helped take the pain down to a manageable level.  It went in waves from manageable to painful and back again even while on the iv meds.  Finally various test results trickled in.  My blood tests were all normal (well, a few were off, but only what is to be expected with a double ear infection); cardiac enzymes were normal.  Chest xray came back completely normal; happy lungs and happy heart.  Ultrasound came back normal as well; veins are thumping along nicely.  All this was great news; except it didn't tell us what is causing the pain.

The decision in the end was that I have active inflammation in my body right now (the hives, though they're starting to improve) that needs to be cleared up.  I'm going to take a steroid pack to try to kick the inflammation.  My hands (especially the left hand) are rather swollen.  Hopefully the steroids will get rid of the hives and swelling and help quash this pain.  If not, then I need to follow up with my PCP and perhaps work with a neurologist.  Tangentially, I am also following up on the unusual EKG with a cardiac stress test next week just to be on the safe side.  Hopefully I'll be able to avoid a cardiologist also!

Mystery pain like this is difficult to work with.  It leaves anxiety and second guessing -- what if I'm wrong?  what if it's something little that I'm making a big deal out of?  what if it's all in my head?.  At the same time, when you do give in and decide to rule out scary things it's wonderful to know that it isn't something awful while simply emphasizing the anxiety and second guessing!  So I'm happy, and at the same time I'm frustrated.  I can't literally cross my fingers on account of the uncomfortable swelling, but I have my arms crossed in prayer that the doctors and I will have the wisdom to understand what is going on and to learn how to manage it.  This pain is not something I can add to my daily pain, it is simply too much.

I am grateful for friends and family who have been so supportive and helpful.  Just having a note that says "I'm thinking of you" or "I'm praying for you" helps me feel comforted that I am understood, at least a little.

A big ROTTEN cherry, that is.

Just over a week ago I posted about the unjust nature of "normal person" health problems such as seasonal allergies in a person who already regularly juggles chronic health concerns.

Well I have a bone to pick with those seasonal allergies!!!  After using every technique I know to stave off infection this one was just too strong for everything I tried.  Yesterday morning I went to my PCP's office (primary care physician) in extreme pain from an ear infection.  I told him my left ear is a little uncomfortable but my right ear was agony.  He looked in my left ear and said "This is the GOOD one?!  It looks pretty bad to me!"  Then he looked in my right ear and said "Oh."  A spectacular double ear infection.

I was prescribed ear drops and amoxicillin for the ear infections and apparently a sinus infection as well.  It seemed to be good enough news to me.  The drops are numbing and help dull the pain.  I've taken amoxicillin dozens of times and it generally works well for me.

Last night I took the first hefty dose of amoxicillin.  This morning I took my second dose and was pleased to notice that already I have less pain.  There was much rejoicing ... until the hives started.

I am now slathered in benadryl cream and have just taken 2 benadryl capsules (excuse me if I fall asleep in the middle of a sentence).  My hands, arms, elbows, knees, ankles, neck and even behind my ears are now splotched with insanely itchy hives.  Despite the cream and the medicine I can barely stand to not scratch.  I'm doing my very best though!  Daughters have been on self-imposed "mommy watch".  When I start scratching without thinking about it one of them will come grab my hand and try to distract me.

I didn't particularly consider the amoxicillin as the culprit at first, but after texting my mom, who recently conquered a long term batch of hives, to tell her that I'd found her hives and they're on ME, the first thing she texted back was to stop taking the amoxicillin and call my doctor in the morning.  After some consideration I was convinced.  It's not an unusual thing in my family to be allergic to amoxicillin.  Over the last several hours the hives have not only spread, but the areas covered with hives are also swelling.  Making a fist is difficult and painful as I have several hives on the palm of each hand which have swollen.  Darn it!

I think it is now time to go to bed and try to not scratch my skin off in the night :)

How sick is "sick enough"?

This rambling is something I've been thinking about for a long time.  In fact, this "discussion" (with myself) is one of the biggest reasons I created this blog.  Through writing I'm able to get things out where I can see them and think about them.  It helps me organize my thoughts better (trust me, this *is* organized).  I'm the type of person who will write an email or a comment and then decide not to send/post it because it was really for my benefit rather than for the other person.  So here I am, venting.

Interestingly, I'm not talking about any of my illnesses today.  I'm talking about other people.  Healthy People.  People who don't live with chronic pain in their body.

I'm gonna come right out and say it: I do not instantly feel sweet and caring when my husband has a cold.  There.  I got it out.  My initial instinct is to compare the discomfort of a cold versus the ear infections I went through a few years ago that didn't respond to antibiotics and landed me in surgery to have ear tubes placed because the infection had spread to the mastoid process (the bone behind my ear).  I nearly tore someone's eyes out (not literally) because she felt queasy through her pregnancy, threw up once, and declared "I know how you feel now".  I throw up constantly all 9 months of pregnancy and find no relief whether I do or don't lose my lunch.  I would have loved to settle for "queasy" rather than in and out of the hospital for hydration and to manage early labor.

BUT...

that doesn't mean they are not in pain.

They are in real, physical pain.  So don't they deserve sympathy?  Don't they deserve a pot of chicken noodle soup?  Shouldn't they get a day in bed to moan and rest and recover while the kids are kept in another area of the house to not interrupt their rest?

In the hospital they always ask how to "rate" your pain.  There's a helpful little chart with smiley / frowny faces on it to correlate to the pain.  "0" means "no pain" and "10" means "worst pain imaginable".  Easy, right?

Let's look at it this way: You go on vacation and stay in a noisy hotel next to a busy road..  The first night it drives you crazy.  The second night you stuff earplugs in so you can get some rest.  Eventually you stop noticing the buzz, the honks, the sirens, and figure out how to sleep.  Take a healthy person and throw unmanageable pain at them all of a sudden and they're're screaming level 10 pain pretty dang fast!  But as they make adjustments and are forced to go on with life as much as possible, they learn to accommodate the pain. It becomes an obnoxious buzz in the background.  That same level of pain now can be tolerated.  In this way the pain scale has now shifted.  What used to overwhelm me can now even be considered a "good day".

Now the misery of allergies is, well, miserable.  But not as bad as the usual.  The flu is miserable also, but not worse than medication induced nausea / vomiting on top of the usual aches and pains.  Therefore, it is hard to feel a whole lot of sympathy for something that in personal experience is just a broadening of symptoms instead of a full about-face in health.

SO...
this is what I think about it all:

Being close (emotionally and/or physically) to a person with chronic pain is going to be hard.  And ya know what?  You may not get a lot of sympathy for your little health snafus.  Please try to be understanding.  Please don't throw a whole lot of drama around for a hangnail.  That's not going to get you and more sympathy for being all bent out of shape or comparing your suffering to any one else's.  Feel free to be open about how you're feeling anyway.  A simple "I've got a terrible headache today" or "What would you suggest for tight muscles in  my shoulder?" will get you further than refusing to get out of bed cause you woke up with the sniffles.  A lot of people who suffer from chronic pain have tried pretty much everything to "fix" their body.  I know I've got a half dozen ideas for pretty much any pain, infection, discomfort, or illness.  I'm happy (or maybe more than happy) to try to share what I have lived.  Since so many things don't work for me it's nice to see them work for someone else.  It shows confidence in my experiences and understanding that I have been there before.  And you know what?  The chances are good that I can actually help.  And once I'm helping I get feeling all sympathetic and wanting to see real improvement without a grudge.

Being a person in chronic pain, sometimes you've got to suck it up and let someone else bellyache without your interference.  Not everybody wants you to parade your experiences out and play doctor by telling them 10 things to try to get better.  Sometimes they just want some sympathy and a nap.  (I'm a big believer in the power of a satisfying nap).  Yes, some times it will be hard to put your own needs on the back burner for someone else's seemingly minor discomfort.  It's great to be willing to help others, but allow them to do their own thing as well.

Reading the statements above, it makes no sense does it?  I just totally contradicted myself.  But here's the trick: BOTH PARTIES are responsible for keeping relationships (whether that's friends, family, neighbor...) stable.  BOTH need to be aware of the other's situation.  It is not likely to always be easy.  My husband may feel like I "get" to be sick all the time but perhaps I cannot allow him to be sick an stay in bed just for one day.  I may feel like I have to be sick all the time and he gets to stay in bed for one day for "no reason".
If he is sick and says "I feel awful.  I know you go through this all the time.  What can I do to feel better?" then I know he's ready for some help.  If he doesn't ask for help then perhaps I could remind him "I know a few things that might help relieve your congestion if you want." then let him ask if he wants more specifics.

Long story short: LISTEN to each other and FORGIVE each other when we mess up.  Cause it's gonna happen.  I love my husband and I know how awful it is to feel sick.  Sometimes it still takes a little perspective.  Sometimes we have to step back and apologize for messing up.

Now that I've written an epistle I'm going to use this to reflect back on the next time I start begrudging someone a tummy ache.

With a Cherry on Top

With several overlapping health issues it's not hard to end up feeling attacked from every angle at times.  Right now my fibromyalgia is pretty well managed.  It's not perfect, but I'm not going to hold my breath for perfect.  It has reached a tolerable point and I am becoming used to the muscle relaxants enough to not feel knocked out with every dose.  My IC is still flaring and I'm having a hard time managing the pain.  Hot baths help the pain in my back, sides, and pelvic region.  One can only spend so many hours a day in hot baths though!  I am looking forward to seeing my urologist in the morning for this flare.  The thing that it killing me today is nothing other than the ubiquitous hay fever.  Seasonal allergies.  Oy.

The ground is coming alive outside!  Flowers are starting to poke through the ground.  Trees are starting to swell where leaves will start to open in the coming weeks.  The sun is starting to stay up longer and feel warmer.  The last of the crevices that had filled with ice and snow have melted clear and are waiting to fill instead with wandering morning glory vines or dandelions, just to keep things interesting in the landscaping department.  All the world I spend every day in is beginning to warm and cheer...  and in the glory of it all I feel ungrateful to be sneezing, snuffling, and nursing a throbbing head.

I have a nasal spray my doctor prescribed last year when I had sinus infections one on top of another thanks to the congestion.  I have had allergy testing done in the past and every local weed that was tested popped up a red welt on my inner arm.  Several local wild trees popped up too.  The biggest welt lasted a week!  It was the test for mountain cedar -- the tree that is currently blooming.  I will have to rediscover the best medication to manage my allergies during the day without knocking me out and during the night without keeping me awake.  I know that if I am kept awake with stupid hay fever my entire body will rebel again.  That's too high a price to pay in my opinion.  I am using a selection of essential oils, but at a certain point it's time to break out the long acting time released relief!

IC flare

Last night Hubs told me he would be working from home today.  I was to sleep in and get lots of rest so I could start feeling better.  By dinner time last night I was in pretty major pain in my bladder.  As soon as dinner was over I went and soaked in a hot bath with jets for about 1 1/2 hours.  It helped, but only while I stayed there.  The pain makes it very difficult to walk, move, and do all those little mothering things I want to do.

Bless his heart.  I slept (or at least stayed in bed) until noon today!  I even called my urologist and managed to get an appointment for Monday morning.  Hopefully there will be something the urologist can do that will help ease this pain.  My right kidney has been bothering me for several months.  I wonder if there's a stone in there again.  I don't think it's an infection, but I'm sure they'll test and culture to make sure.

This round of pain isn't as severe as some are.  I am able to avoid the pain by sitting still and putting something warm (wish I could find my heating pad) over my bladder.  Even just sliding down and holding my laptop on my lap helps a little.  I wish I wasn't running to pee three times as often as usual.  The getting up is as obnoxious as the peeing, since it hurts to get up and walk.  But seeing how life with IC is for many women (and the occasional man) I know I don't have it as bad as I could.  Not even halfway.  For that, I am grateful.

Blahs

I don't know if I'm sick (with something acute, I mean) or worn down, or having med issues, or what.  But I'm barely making it today.  My bladder feels like one tensed up knot filled with battery acid.  My muscles through my whole body feel wrung out and tensed up at the same time.  My right "flank" throbs and hurts (kidney area).  I'm running to pee every hour or so.  My eyes can only be dragged halfway open.

Even with all this going on I have managed to unload the dishwasher, drive Middlest to a before-school activity, make sack lunches, get Oldest off to the bus, made homemade bread, wrote a note to the kindergarten teacher apologizing for not making it to help out today, got Youngest off to her bus, and managed to get a nap in for about half an hour before going back to the school to hear a school choir program.  Then back home to referee snack time, homework, and chores, put dinner in the oven, and start counting down the hours until I can go to bed.

I'm exhausted!

I believe I'll be contacting my urologist tomorrow (I keep putting it off) to ask for a new med to help manage what I assume is an IC flare.  I barely have the energy to sit here and move only my fingertips to type this.

On a side note:

Husband has been so helpful emotionally lately!  I dropped  by his office to swap cars the other day (mine was full of dinosaur bones and I needed space to pick 4 kids up from school).  I thought I was putting on my "healthy face", but as I walked in he stood up and wrapped his arms around me and whispered "I'm sorry!".  I asked what for and he told me he's sorry I hurt so much.  He could tell even though I was trying to just power through.  I didn't realize how much I needed that understanding!

Love and Pain

My sweet, patient husband just sent me a link to an article about loving someone with chronic pain and illness.

Love, marriage, and disability -- four ways to keep your relationship strong despite chronic pain and disability

By Peter Rosenberger

Published February 19, 2012  | FoxNews.com

More than twenty-five years ago, I married my wife shortly after she survived a horrific car accident. To date she has endured more than seventy operations (fifty on my watch, so far), the amputation of both legs, and nearly $9 million dollars in medical bills. Through this continuing ordeal, we have had countless hospital stays during birthdays, anniversaries, and holidays …including Valentine’s Day. 

Raising a family and keeping love alive in a marriage with a spouse who is constantly sick or in severe pain is an extreme challenge; one with many casualties. 
The divorce rate in couples with a disability in the family hovers around 90% and relationships with a disability or chronic medical condition face significant pressures on the love holding the marriage together. 
Relationships that endure through these types of challenges seem to all share four characteristics which allow love to transcend the brutal circumstances.  

1. Separate the person from the painHow do you keep love and passion thriving in a chronic medical catastrophe where the suffering is not limited to a short-term illness or injury?
Different from Alzheimer’s or dementia, marriages impacted by one spouse living with a broken or diseased body while retaining complete cognitive awareness encounter a different set of emotional trials for the marriage. The challenge for the healthy spouse is to maneuver through the minefield of medical issues, attending to each of them, but never losing sight of the suffering person’s heart.
The challenge for the sick or injured spouse, even from a wheelchair or while in severe chronic pain, is to recognize that matters of the heart, though often less demanding, are just as important (if not more so) as the needs of the body. 

2. Keep living, even while hurting It is appropriate to acknowledge our hurts, but, after more than a quarter century of living with someone who daily suffers from severe chronic pain, I have witnessed the difference between “living with pain” versus “living while in pain.”
As Christ hung on the cross in excruciating pain; (the word “excruciating” is a Roman word invented to describe the horrific pain of crucifixion), He acknowledged His own agony, but never wavered from the relationship between Himself and His Father, His mother, the thief dying next to Him …and even those who crucified Him. He lived while in pain.
To love someone IS to live …even while burdened with extreme agony and challenges. 

3. Love even while hurting Everyone hurts at some point; even super models and professional athletes suffer physically at times. Using sickness or feeling bad as an excuse to disconnect from the needs of close relationships sets a horrible and destructive precedent that seems to say, “I can be focused only on me whenever I feel bad.”
Experience teaches me that life-changing and transcending love abounds when we choose to turn our eyes to others …particularly (and peculiarly) while carrying great burdens ourselves.
We cannot escape the relentless difficulties in this life; we do however, have the opportunity to embrace each other, even while in pain, and discover love …and romance, are not dependent on external circumstances, but instead reside solely in the heart. As the wonderful Rodgers and Hart song stated so well:
My romance doesn’t have to have a moon in the skyMy romance doesn’t need a blue lagoon standing by;No month of May, no twinkling stars,No hide away, no soft guitars.My romance doesn’t need a castle rising in Spain,Nor a dance to a constantly surprising refrain.Wide awake, I can make my most fantastic dreams come true.My romance doesn’t need a thing but you. 

4. See the heart, not "the chart"For caregivers I offer this advice: if the love of your life struggles with chronic disease or injury, take a moment to see beyond the medical chart, the broken body and the pain-filled eyes…and connect to the heart of the extraordinary person who captured your heart.
And for those suffering, look deeply into the eyes of the weary soul who looks after you, quietly hold hands together, and bask in the love you both share; a love that is defying the odds. 

Peter W. Rosenberger is the president of Standing With Hope, the non-profit prosthetic limb outreach organization that he and his wife, Gracie, founded in 2002. He is also the author of numerous articles and served as the writer for his wife’s book, "Gracie: Standing With Hope" (Liberty University Press 2010). Peter is currently working on his next book in which he offers encouragement and practical help to caregivers of chronically ill individuals.

I am indeed grateful, and feel extremely blessed, to have a husband who has never made me feel less for the difficulties my health issues have brought to our lives.  He has never complained of the expense (usually close to, and once exceeding, $10,000 per year) and has promised me over and over that he does not care about the cost as long as all that is necessary has been done for me.  He reminds me to take my medications, picks up prescriptions on the way home from work when I forget to,   He kindly lets me know when he suspects I may need a change of medications.  In fact, he almost always notices when something is not working well enough before I do (especially with depression medications).  

When we were dating I remember he told me once that he needed to change jobs.  He was working construction and he really enjoyed his work.  I asked him why, because I wanted him to do what he enjoyed.  His answer was "because I'm in love with a girl who has some medical problems.  It is extremely rare to have a construction job that provides medical benefits."  He continued working construction, but by the time we had been married for a year he had left his construction job and we were doing all we could to find a career for him that would address his own needs (which include accommodating ADHD) and which he could qualify for, despite not having a college degree.

After years of working and searching we finally ended with the job he has now.  It was a long search and involved a lot of failures and difficulty.  He went back to college, but difficult pregnancies made it very hard to have him gone all day to full time work and full time school.  Finally after a long path he got his job and has quickly worked up to a position he is very good at and in some ways uniquely qualified for, as an individual who understands and enjoys web programming but also is a competent manager and works well with clients.  In terms of health issues, he also has very good health insurance.  And ever more important in some ways: he has an understanding boss.  I know that any time on any day if I really need his help, I will have it.  His boss and the others he works with would all be very understanding of my needs.  Usually I do not need on-the-spot care, but there have been a few times when it was critical due to physical or emotional issues I couldn't not handle alone.  Having that support from his work has been invaluable.  

I am glad that we have enjoyed life together.  When we were told I had cancer a couple of years ago we worried and researched, but mostly we joked.  I'm afraid we may have shocked some people by the silly cancer jokes we told about our specific situation.  He sat by my bed every day of the week I was in the hospital after open abdominal surgery.  He gently lay me back in bed after each walk around the surgery unit.  He brushed my hair and made me do everything the nurses told me to do.  My memories of that time are very hazy, thanks to the huge amounts of pain mediation I was on, but those things I remember.  It was a tender time. 

One last point regarding love and chronic pain: My husband never complains about anything that I have no control over.  When my pain is such that I cannot get the dishes done he gets out the paper plates and carries on.  When I cannot emotionally handle making a phone call he either does it or sits and waits patiently while I gather the guts to do it.  Sometimes he asks to see if I do have control over something, but if I cannot fix it, he accepts it along with everything else.  I do work to make the burden light on him, but there is such a lot of it that it is still a large load.  It has been a partnership to manage my health and I'm glad to have such a good teammate.