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.