Scenes from the Immune System Wars

Today has reminded me of some things:
1. I am incredibly stubborn.
2. I am a perfectionist.
3. I expect the people around me to live up to my crazy high standards.
4. Items 1-3 can be assets or negatives depending on how they are handled

Since I have been a sick-o I have had to learn to be more forgiving of myself and others. It has never been an easy thing.
In fact, I have to learn it over and over again.

The last week, as we have come off of vacation and back to real life and all its myriad of weird shit stuff to solve: dead car, car that was hit in front of house by drunk driver, and… oh! my son has West Nile virus but will be fine, NO WORRIES!!! I have hit the ground running.

I have doggedly refused to admit defeat in the face of my own weakness. Somehow, I always think that if I sleep enough every night, I will somehow prevail and it won’t catch up to me.
Well, that’s dumb.
My previous entry details that I am all infected at the moment.
But hey, the dr. gave me prednisone. Prednisone gives me crazy energy. I run and run and then collapse in a heap.
So today we went out to solve the car issue. We sold one and bought one.
It took ALL DAY.
Tonight, I wanted to go to a family party.
However, it was/is patently obvious to the people I live with that I am out of vroom, vroom.
My daughter and husband looked at me and said, “no.”
I was irritated.
I was aghast.
How presumptive of them.
Well, fuck that noise!
Oh yeah, they’re right.
I am a mess.

I think;albeit very, very slowly, that I am learning that having limits does not mean that I am less than or that I am completely broken.
It means that I am partially broken (which I hate) and that if I want to do stuff, I have to pay attention to the screaming voices inside of me that say, “slow down!”

When I don’t, I get irritated, not just with myself, but with everyone, for not doing my bidding.

I become tired, in pain, short tempered and really, really hard to live with.

I am not saying I am the only one at my home that gets that way: I’m not.
But, being that I seem to have the job of maintaining that calm center at the heart of my home, I cannot do it when I am too sick to operate.

It isn’t fair to me or to anyone else.

All of this brings me to the reason and I cannot go to the party tonight even though I am aching to go.
Pushing has horrible consequences; for me, and for everyone in my family.

I get that.

I finally get that.

That doesn’t mean it won’t happen but it is a very deep thing to finally understand and move towards acceptance.

I have to understand that there is a point beyond all reason where I cannot go. If I go there, the consequences are usually dire. I don’t get to make that call anymore. Chronic illness took that from me.
And, it isn’t giving it back… no matter how much I want it to.
That’s a bitch. It really is.

Ah, Summer! It is here. With all of its glory and heat and extra special humidity this year.

I cannot say that I feel any less stressed or “off of work” like I used to. I am still home schooling my teenager. He didn’t finish everything but we are going at a more leisurely pace.
My college aged daughter is back home, which is lovely and at the same time stressful. She is at that pivotal point in her life when she is almost ready to fly completely solo, but not quite.

Vacation, lovely beachy vacation, is already come and gone.

And what did it leave in its innocent wake?

Snot.

That’s right.

It left: Snot.

Let me paint the scene for you.

Picture a perfect day on a perfect boat in a perfect ride chasing after perfectly charming wild dolphins:
The idea is that you (and other boats doing the same thing) run around after the dolphin pods that seem oblivious or think it amusing, and when the captain tells you, “jump, jump!” you drop out of the boat into the crystal clear and cool water and the dolphins simply swim around and through you.

It’s sort of crazy but very charming. They give you snorkel equipment if you like and you just go for it.

Then there’s me. I tried to go for it. I am a good swimmer and basically fearless when it comes to anything water related. At the first stop, I jumped. I also tanked a bunch of sea water up my nose and into my ears. Normally this would not have bothered me. But, in the era of chronic disease Katie, I knew it was bad. I also knew my energy was already pretty tapped out.

I had infused the day before and yet still hiked up and down the beach. I was pushing and afraid to push too far lest my body pushed back with a giant “SCREW YOU!”

So, I had a couple of choices. I could: A. Feel sorry for myself and whine. B. Put on my big girl pants and gracefully hand other folks their equipment each time we stopped. C. Figure out how to land somewhere in between the two.

I tried to go for “C” with a healthy dose of “B”.

I got back out of the boat when the captain parked us near a beach and we could get out and explore the area. I still made a sloppy mess of getting in and out but I didn’t submerge.

After we were back from the two hour trip we went to eat sea food at a beach front restaurant. It was a great topper for a great day.

Somewhere along the way my son got off on the topic that I sure am a lucky woman to have a husband that doesn’t dump me since I am such a sicko and so, well, useless.

He is fifteen and talks a lot. I don’t think he meant it to come out quite like it did.

But, in any case, it struck a chord in me and stoked up all of my darkest insecurities.

Now, after a week back at home, I am back to my usual whirlwind of teaching, cooking, cleaning, organizing, fixing,
and whatever else it is that I do. And, I am full of snot. Full to the brim with a sinusy, infectiony,
ouchy thing.

I knew it would hit me after the wild dolphin incident. It isn’t too bad and I can keep going.

I will live to see another day!

But, I do feel useless when I can only go until 6 p.m. without collapsing.

I do feel like a burden when I get tired of listening to everyone’s troubles.

I don’t want to wear out and snort about like a little piggy with a stuffed up nose and achy ears and the rest of it.

But, I enjoyed the trip that I planned and made happen. It was good.

Getting out of town is always worth it.

Jumping in and out of boats is also always worth it.

The smoked tuna dip with a touch of jalapeno was also worth it.

It just all comes out in some sort of strange cosmic equation that I cannot explain to someone that doesn’t have a chronic illness.

Smoky tuna dip + Boat + Wild dolphins + Seeing my family really happy + Sinus infection = Net gain.

I was never good at math but I can tell that solving for X is not happening here.

If snot were “X” and wild dolphins were “Y”….

Oh, never mind!

Sickland is a featureless place.
It smells of alcohol and bed sheets and is lonely.

Sickland is a place I have to go all alone. When I try to come out for a visit, things don’t generally go too well. Despite my best attempts, I am often misunderstood, irritating or simply irrelevant.
I don’t know why this is.

I think it is just a fact of life for those of us who go to Sickland often.
Our families and friends have to protect themselves from the ups and downs of living without us. Or maybe it is just too much trouble, I don’t know.

All I know is that it is best I remain quiet and cocooned. If I want to be held or hugged, I have to ask for it, repeatedly. Comforting does not come easily in my family. Nor is it easy for me to ask.

I feel like an irritating, small pet that sits on your couch and poops on your carpet but never really does much of anything.

I struggle to ask for what I need and then feel shunned when I am cut out of the daily life of the family.

Life happens around me. I am not a part of it.

It is difficult.

I hate it.

I hate Sickland.

I would rather fake being well than live imprisoned here in Sickland. I suppose that is why I often push way too hard and end up here. The thought of being confined and alone is so utterly repellent to me that I do almost anything to avoid it.

But sometimes there is no choice.

I don’t get a say in the matter.

That’s why they call it chronic illness. It never leaves.

The unwelcome guest(s) in my body sleep at times but never vacate the premises.

These unwanted tenants are always there, waiting to whisk me away to places I know but loathe: hospitals, doctor’s offices, beds and twilight sleep; days and nights confined to my house.

Sickland.

I hate you.

How are all of you out there in blog land? Blog-o-sphere?

It is the end of another school year and those of us involved with students and the cycle of semesters are running towards the finish line, or limping, if you are like me.

I stopped teaching as an adjunct (where I was for almost 15 years) about three years ago due to my crappy health and have really missed it. But, with having a kid in college and another still in school it seems like I have been pretty plugged in.

Well, this past October changed everything in that regard. I started home schooling my ninth grader. It has been an incredible learning experience. I now know way more about high school curriculum than I have in many years. I have learned lots of science, because that is his main interest and we participate in an incredible home school science group, where he competes both in Science Olympiad and Science Bowl. This means he is practicing and competing through out the school year.

It has also been exhausting.

The last couple of weeks I have been back at my old tricks, grading college composition papers, for a professor who had her baby a bit earlier than planned. My old department called and asked if I could pick up some of the work. I was happy to do it. It felt good to be back in the swing of it, mentally. And, I am always happy for any little paycheck since disability is not much money, at all.

With all of that happening, my aunt needing me every time I turn around and my daughter calling, it seems like enough.

But, no. Life doesn’t work that way, does it?

It turns out my gastric pain is back in full force. I can’t eat without being in significant pain. I haven’t had my liver enzymes checked since they went wild a few weeks ago because I frankly just gave up.
But, Friday I saw a Hepatologist from the medical school in Dallas. He comes to the Austin area once a month and I was able to see him. He had some new ideas! He does not think I have cancer or hepatitis or anything like that. He thinks I have a biliary stone, which has been looked for already, that is flipped inside one of my oddly shaped ducts and invisible to the MRI and even to the limited surgeries I have had with scopes. In other words, he thinks I probably need major, exploratory surgery to get it out.

This is good and bad.

He believes it explains the off and on again nature of my problem and why it has not been solved. So, he is researching all of my files and talking with my gastroenterologist to see what he can piece together. In the meantime, he told me the horrid pain and high liver enzymes will happen again. I am a sitting duck.

It isn’t a good feeling.

I want to go on vacation in a few weeks and I don’t want to be ruled by this. It’s pissing me off!

It’s crazy. But, I am trying to be optimistic that there is path ahead that may lead to a resolution. I guess I have to follow it and hope for the best.

In the meantime, I will keep pushing my teenage student to the end of his yearly studies, and grading those papers. Oh, and driving my aunt all over the place!

Carpe Diem: and Liver Duct e’ Puke’em.

I think I have experienced a new low in the treatment of my chronic illness.

The only thing I can figure out is that my rheumatologist is trying to get rid of me. I am too much trouble, it seems.
Well, that feels bad.

But, to be honest, this is not the first time this has happened.

Let me explain:

Over the last three months or so, I have been having ‘flare’ symptoms, meaning, my body has been swelling on the inside. This has caused me to have bladder spasms and tight chest muscles and a variety of other things.

I know the flare is ‘real’ because my blood work shows that my ANA, which indicates a triggered autoimmune response, is high.
In addition, I have had swelling and I am, for the first time ever, anemic.

I have been really ill with unexplained high liver enzymes and my fatigue has been off the charts. When I can sleep, I am often out for fifteen hours at a stretch.

This fatigue and increase in pain is difficult to deal with but I cannot seem to get any answers.

This whole time I have been forging ahead, not hospitalized, and trying to just keep going.

Any special treatment or consideration of the blood work and symptoms as a whole, has simply not happened.

I have asked my rheumatologist and her colleagues at the clinic where my gastroenterologist, immunologist and dermatologist, and psychiatrist, all work. I have been going there because the clinic uses the Mayo model: i.e. they collaborate about your case with one another.

It seems this situation has backfired in my case.

After questioning my rheumatologist several times on the new e-mail system for patients, I received the reply that my conditions fit under a theory called TMS and she directed me to the lectures and book of a particular physician who espouses this theory.
The theory is that inflammatory disease processes are a mind body response to unconscious stress. Also, that this is the only answer to the levels of pain and poor health experienced by people with my profile, in her opinion.
It seems, she no longer believes I have verifiable illnesses.
This is odd because on my last visit with her she discussed changing my medications, which consists of immuno-blockers, to something stronger.
This is added together with the fact that I have an immune system deficiency that I treat weekly with a subcutaneous plasma product. I was diagnosed with this illness ten years ago after being sick with a lifetime of upper respitory illnesses and three, back to back sinus surgeries that were unsuccessful at treating my infection.

In other words, the primary immune deficiency I have has been verified. In addition, my connective tissue/autoimmune disease was verified by a doctor at the Mayo clinic in Jacksonville, Fla.

I am not making this shit up. It is weird and hard to pinpoint and frustrating, but it NOT a fantasy.

It is also not something I can get rid of by doing a workbook to pinpoint my problems, from a psych stand point.

I do journal and write all kind of things. I have a blog and a book of essays and on and on.
I also see a psychiatrist, who, by the way, cut back all of my meds and completely took me off of a few. She told me I am coping incredibly well with all of it and congratulated me.

I even have a therapist and marriage counselor. I have all of those things.

Oh, and I went to Seminary once upon a time and I am trained to do counseling at a basic level myself, not to mention the other degrees and 20 plus years of teaching, where I interacted with students with problems all the time and referred them out to counseling.

In other words, I don’t have a lot of pent up Issues that are impeding my health.

I AM NOT THE CAUSE OF MY OWN INFLAMMATION.

Do I have problems? Hell, yes!
Do I have a perfectly calm and carefree life? Hell, no!

But, I don’t work outside the house anymore and I conserve my energy as well as anyone in my position can.
I have a 15 year old son that I home school, because of health and depression problems.
I have a 20 year old daughter in San Antonio (90 miles away) who calls me a lot because this has been a tough semester and she is transferring.
I also have an 80 year old aunt who lives nearby and drives me insane.
I am pretty upfront about all of that.
My husband works like a dog to keep us all cared for. I cannot lean on him much.

In fact, I think I am pretty good at confronting my problems.

I have a lot of anger. I know that. It is one of my default emotions and it is not particularly helpful.

But, I don’t hold it in.

I exercise as much as I can (pool therapy and dog walks and house work in a 3k square foot home).

I eat very carefully.

I just don’t think the doctor has a point when she tells me my problems are somehow psychosomatic.

My health is a problem, yes. But, it is not one of my own making: neither consciously or unconsciously.
However, if this is what she believes to be true about me, there is probably no way I can expect to get good treatment or problem solving, can I?

So, what to do? Do I run to another rheumatologist? Do I change my approach?
Yes, and no. I will see her one more time before I dump her, and ask her quite frankly about these things.
I will also go visit with the shrink, the therapist and the candle stick maker, to see if I am missing something here.

But the net result of it all is that I can not stand going to doctors anymore. I don’t like any of them. I have given up on working collaboratively. I have just been burned too many damned times.

Also, I am not going to do anything about my physical issues, tests or otherwise, unless I am close to death.
I am going to take my infusions and my medications like a good girl and try to stay healthy on my own. I will see the doctors when I have to for refills and beyond that; I just don’t want to go.

If I am really, really, sick, we’ll know.

No preventative medicine or figuring out why I feel like crap…

I am all done with that.

Next week I am meeting a new internist who also works at the clinic I mentioned above. She is the wife of a friend and was recommended highly. I will run all of this past her.

If she freaks, she isn’t my doctor.

If she tells me I should just back off of rheumatology or switch doctors, I will.

As I said, I am tired of trying so hard.

Those of us with chronic and often rare, poorly understood, conditions have to advocate for ourselves. I have done as good a job at being my own advocate as I can. I think at some point, clamoring to be heard when someone has their fingers in their ears is just not going to work.
In fact, it is taking more energy than I have to keep clamoring.
So, for now, I will be quiet and hope there is no big disaster looming on the horizon that I could have stopped, “if only.”

I will just have to live forward.. in pain and fatigued and with other issues, but going forward.

I won’t let a doctor who is tired of me make me feel as though I am “not sick enough.”

I’m done.

I write with chicken hands this morning.  The pot on the stove is bubbling away: my Passover matzoh ball soup  on its way.

It will even be gluten free… just like  my matzoh, just like me.

The meal will be set, the family I gather around myself to hear the old story…

I think of my ancestors, preparing the meal, carefully Kosher, in dark kitchens.

This day will be long but I will serve all of you, and leave an extra place, for You.

But, I will.

Me and my chicken hands will carefully arrange the plate;  our Seder of tears, questions, memories of slavery, memories of exodus and renewal and it will leave us pondering anew;

When does the journey end? Where does it go?

It doesn’t matter.

For me it is the journey and the questions and inevitably, a few answers…

A sense of lines so deep that nothing: not history, not mass extinction, not distance, can erase.

My family: I have found you at last. You were there the whole time.

My Lord: we have found me at last.

Here at your table:

I knew you were always here with me.

But oh, it has been a long, long, time, since I have felt welcomed home.

Come in, Elijah!  Come in, Adonai.

Come sup at my table and fill me and those I serve…

The slavery, the wars, the losses and gains, all are welcome here.

And I know that You, I AM, are here too.

Thank you! Thank you! From the bottom of my imperfectly Jewish heart to my dirty… chicken hands.

 

Metal chair and metal table.

Bright, disruptive light.

The bed is not a bed but a torture device of cold steel with a pallet of cotton on top.

It is freezing here.

Maybe I’m dead.

Could it be that this is the room where they drain the bodily fluids for the autopsy, just like on TV?

Maybe the next stop will be a drawer and a toe tag.

No, I don’t think so.

I wouldn’t still feel this shitty.

I would be floating above me and looking down at my plump little body and thinking, “Oh no! oops, I didn’t mean to do that.”

But I might also be secretly relieved.

That’s a horrible thing to say, to write, to think.  How utterly horrible of me.

But, it happens.

Because I see the metal chair, the bright light, the table with the thin cotton mattress all too frequently.

They frighten me so much that the thought of them makes me shake and cry and want to do just about anything to avoid them.

The next thing is the nurse and the needles and me-talking brightly- while she pokes me: over and over and over and over and calls in the next nurse, (the really, really good one) who pokes me: over and over and over and over and maybe two more (really, really good ones) and finally, a fancy ultrasound machine that helps them find my veins and they use a little harpoon to dive in under the skin, to the deeper veins.

I chatter and breathe deeply and they tell me how I am a real “champ.”  I always think they are going to say,

“Chump. You’re a real chump. You come in here and expect to get an IV in those crappy arms with all those blown, tiny, scarred veins!!!!”

The joke is on me, folks.

Most of the time they just get in there and take the blood and leave.  I get nothing from the exchange but bruises.  Nausea, pain, the rest of it, goes untreated.  Because I am ‘chronically ill’ I have to prove that I am in some sort of extra straits in order to get pain medicine or any real relief at all.

So I just lie there.

I count the ceiling tiles, over and over and over.

I try not to panic.  I try to breathe.

If I try to read my I Pad, they say I am not sick enough to be there.  This happens even when I have been ordered by a doctor to go.

I often feel I am on some carousel of the damned.  The horses and giraffes and other animals go ’round and ’round and they all have needles and trays and they beckon to me, saying “hold still, just a little stick.”

“The doctor won’t give you anything unless they know what you have.”

“You can go now.  We don’t know why you are so sick this time.”

“Here’s the door.”

“We are always here if you need us.”

 

 

I am here, it seems.  I have arrived at middle age with a great big hrrmph.

My knees are creaking and my hip is dipping and my back feels like it is broken.

Wait!  Is this the connective tissue disease?  Is it the CVID?

No.  I don’t think it is any of those.  It is a bad case of fat.

Yes, I said that.

I am over weight.  I fight it all the time and yet it is still a dirty fact.  I read about fat shaming and positive body image and about fatkinis (those are bikinis for big ladies) and all the rest.  I even looked over a bunch of nude photos of the late Leonard Nimoy’s that were a celebration of big women.  (Spock was a perv!).

I stared at those photos, wondering if I look like any of the fat women in them.  Am I the really roly poly one with the thighs like tree trunks?  Or am I like the slightly less voluminous one who has the lovely face and is kicking her leg way up high?

Why, in fact, do I care?

I do not hate fat people.  In fact, I am my own worst judge.

Like many women, I have been inculcated into the league of the imperfect woman.  I was never this or that or whatever enough to be beautiful.  But, I lived through it.  I grew up and I got over it.

What I am worried about now is my damned joints.  I know that the less weight I carry, the better.  And yet, my body does NOT like to let go of weight.  I have been on a lot of nasty drugs that have nasty side effects that include bloating.

I have also been on some that are supposed to be appetite suppressants: so what the hell?

Do I just accept this and move on?  Or, creak and wheeze down the road… as I am?

That has never been my way.

Instead, I start Weight Watchers for the upteenth millionth fucking time again tomorrow.  I have to.  I have to do it for myself and for my family.  My son, who takes after me in so many ways, is doing it too.

For him, I will make this work.

I will do whatever it takes.

No more creaking and groaning.  I’m gonna lighten the load.  And if WW doesn’t do it,  I am going to get a lap band if my doctors allow it. I am not sure it is possible but I am definitely thinking of it. I am not afraid.  I think the benefits might outweigh the risks.  (Pun intended).

We’ll see,   I really need to do it this way if I can.

Day by day is the only way….

Creak, grunt, groan eeeeek.

 

 

So, I guess the stupid disease department has caught up to me.  I don’t go without a fight, that’s for sure.

I mentioned in previous posts that my blood work has been wonky and that I have been “off.”  Well, I have been making the rounds to all my specialists to see what might be brewing and have heard the news that I am much ado about nothing.  In other words, I have the same diseases I have had: but, my autoimmune disease is active again and that is just how it goes.

What does that mean?  It means I am having a flare.  A flare, it turns out, can be either a noun or a verb.  I think in my case it is a verb.  I am not a flare in the person, place or thing- sense; flare as a noun can be described as  ” a bright burst of light.”  No, that is not me.  I am more on the verbal end of things: “to burn with sudden intensity” or  my personal favorite, “gradually become wider at one end.”

My connective tissue, the glue that holds together all my bones and joints and the gooey stuff in between,  is most certainly burning with a sudden intensity.  I can even see in my mind’s eye that the connective tissues themselves are becoming wider as they swell.

What causes this? My autoimmune system is attacking me from the inside out.  It thinks my own tissues are the enemy: I mean, how dumb is that?

You would think I could just say, “Ok, stop it you idiots. Behave!”    Instead  I have to take medicine I hate because it is not elegant but more like a carpet bombing of my system:  I mean steroids.

Steroids are great things when you need them.  They can’t fix a damned thing but they do shrink swelling.  They also make you more prone to infection (already a problem for me) and make your face swollen, your bloated belly hungry,  cause anxiety and sleeplessness:   So, I have been avoiding them.  In fact, I have told myself, “never again.”

My flare pain has reached max output.  I can’t deal with it.  I have to go for the ‘roids.

Yesterday I was bed bound and sleepless due to the pain.  Rolling my eyes back and forth in their sockets was unbearable.

But, I am proud of myself.

In the past I used to come totally unglued and go to the hospital and beg for pain meds.  So far, I haven’t done that yet.

I can do this.

I can flare but not scare.

But I wish I could figure out how to not flare.  There is always an element of self blame when this happens.  It is complicated.  I suppose it is just like with all chronic disease.  I always ask myself the question, “Did I cause this?”

If I did, I didn’t mean to, obviously.  But, it always feels like a sort of failure.  It’s like a giant weight drops down on top of me and I cannot get out from under it.  I want to hide and to sleep it off but I am too uncomfortable.

The blame game can get old.  It is compounded by the guilt I feel for failing to keep up my end of the family work.  It is as though I have a big, “Out of Order” sign on me. I think that in some ways it is easier to be in the hospital, hooked up to pain meds, than it is to wait it out at home.

But, I have to do this.  And, I have to realize, without going crazy, that it will happen again and again and again and there is absolutely nothing I can do about it.

I have to submit.

I have to learn to have my flares with flair…

I am in ‘go’ mode.  It isn’t a bad place to be, actually:  I goes ’til  I drops then I collapse and sleep a lot,then I goes again.

Sometimes I worry about the collapsing part but I figure if I am able to sleep off the effects of whatever is making me sick that week, so much the better.   I have been trying really hard to not think about being chronically ill and to not look at Pub Med articles or Google Scholar or any of those things.  They always end in sadness.

We live in a time when we can overwhelm ourselves with information we do not understand.

And yet, who IS looking out for me and my health?  Well ,I guess that would be me.  I have very little faith in the medical community anymore.  That is not because I think they are bad or unqualified or whatever, it is just because I am weird.  I have to be my own advocate or nothing ever gets done.

So, where does that line fall?  The one between too much information and staying on top of my own health enough to be my own advocate?

I really don’t know.

Could someone please tell me?

I do know that it is more comfortable for my family and friends if I don’t mention my symptoms or illness.  It is better for me to wear more make-up on the days I feel crappy.

I do that to stop the questions.

I can’t answer them anyway.

When you tell people you love that you are at a high risk for cancer and your blood test keep coming back odd, but, “don’t worry,” you have already goofed.

You might feel better because you unloaded that burden of worry onto someone else, but really, it isn’t such a good idea.  It is best to keep that factoid under your hat until you know more. Maybe you won’t ever have to bring it up.

So the real question is, do we, the chronically ill and hopelessly fucked up, need to unload our health worries, our concern for the future somewhere?  Or, should we just close that suitcase of doubt and concern and sit on it… keep the lid on?

I don’t know.

Logic tells me that sitting on a load of baggage is always a bad idea.  So, where do we let it go?

I have been looking for places lately and one I have found is the pool:  Forty five minutes in there, running or doing jumping jacks, sort of drains the thoughts out of me.  I am not doing it enough, but it helps. The other place is here, in my home.  I love to hang on the couch and have the dogs cluster around me and demand to be petted.  Petting the fluffy dogs sucks the baggage right out of me.

Another important place I have found is not in the telling of my fears but in the actual living of my life.  I find comfort in keeping on, keeping on.  Whenever I am out doing the parts of my life I want to do, like taking  my son to his home schooling group or watching  lectures with him or discussing a topic with him, I am outside of myself and I am not working out of my darkest, fear- based self.

In other words, I am trying not to live in my illness.  I just don’t want to if I can help it.

I don’t know if this will always be the answer, but for now I will just truck on and hope I don’t crash anywhere!