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.

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

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.

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.

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.