The Risk of Redemption.

I played a bit with the idea of composing an audio/vid for myself, just something to remind me that there was, in fact, a time when I felt like a normal human being, when pain was minimal and sometimes absent, when I could behave normally, when restrictions of body (and now spirit and emotion) hadn't taken hold.  I know I used to feel better and actually participate in L I F E.  But for the life of me, my mind edits at will and separates the now from the then, the me I became and the me I once was.  So to keep it all in perspective... I made an audio movie with pics ranging from 8 months ago to 4 years ago, before this big crash in everything that is 'my life' and 'me.'

I was hesitant to upload it here (still am), but a friend of mine said "Do it.  Put it ALL out there, and to hell with what anyone thinks!"  It feels odd to see my own face all over this video, but... it's mostly for me anyway, something I can look at and recall that L I F E was there in me, and maybe.. just maybe... I will start believing again.  enough of the typing... arm aches horribly.

The compilation set as a reminder of where I once was in my L I F E and H E A L T H, remembering a healthier, happier me... taking a risk for redemption of myself, an apology to tell the woman I've become.... 'I'm so sorry I let you down."

Well. Damn.

If there's anything that I'm NOT afraid of it's doctors and needles.  I don't mind a shot when necessary, and I don't mind blood work or IVs when needed.  However, one thing I discovered today is: I rather NOT okay with giving injections to myself.  And that, unfortunately, is what it's come to... at least right now.

So I saw my Endocrinologist today regarding my lab results for Cushings, Adrenal Fatigue, and... blood sugar issues.  The latter was a big concern because I ended up with Cushing's Syndrome while taking Prednisone, long-term (approximately 3 months).  My allergist stated flat-out that I would be lucky NOT to end up with Type II Diabetes due to my reaction to the Prednisone.  Lovely.  Especially given that my mom and oldest sister both had it (both deceased).

I have other health issues so the drug my doctor wanted me on can't be an option right now.  Lucky me, instead I get an injection... a treatment for Diabetes that's used for PRE-Diabetes/Insulin Resistance--which is where I'm at right now.  Damn.

Serum fasting glucose, Glucose Tolerance Test, AND serum Insulin were taken to assess IF I were in trouble and how badly.  My fasting INSULIN was double what it should have been, my fasting glucose was 111, and at one point... my fasting glucose (in the past few months) was 123.  I had NO idea about that 123 FG.  So here I am having to give myself a lovely injection in my abdomen (skin) once a week for 2 weeks to see if I need to continue that or not, long term, OR... if she's going to put me on another protocol.

The GOOD news is, at least on this one test, my adrenals are perfectly fine and right in the middle of the normal range.  She doesn't completely trust it so wants to test them again in 2 weeks to see where it is.  I also have to have my A1C tested again in a couple of weeks.

It's begun.

I'm NOT looking forward to giving myself an injection, even IF it's an automatic device and pre-loaded.  Just YUCK!!

I have hypOglycemia symptoms and have had those in the past.  I won't explain the process here of what happens BEFORE a person ends up diabetic, etc., because it's more time and energy than I have right now.  But hypOglycemia symptoms suck pretty bad.  Weakness, shaking, fatigue, cold sweats, headaches, etc.  What fun.  However, we're not exactly sure what's causing the chronic pain.  Endo says she also wonders about a myositis situation given the elevated Aldolase on a couple of occasions.  It's not elevated NOW, but I also was on prednisone and Imuran for 3 months, so that took care of any inflammation there might have been in my muscles.. causing muscle breakdown.

I don't know how anyone will ever be able to nail down the cause of the muscle pain after my having been on corticosteroids.  I just don't know.

Well, the pain is pretty severe so am going to sign off for now.  Wish me luck in the morning when I have to give myself my first injection.

MRI, Lab Results, and Fireflies!

The problem with my shoulder has gotten much worse and I'm pretty much unable to use my arm for little more than simple tasks... such as typing.  I was referred to bone doctor, who sent me for an MRI, which was yesterday.  An hour long MRI... did not sit well with my body at all.  I won't go into all of that now, but... now I wait to find out if it's a torn rotator cuff, which the bone doc thinks it is.  So much for that.

I also received a call from my PCD about some labs that were done about a week ago, and I'm once again being referred back to my hematologist.  Ugh.  The last time was about a year ago and was  for low ferritin (anemia).  I received iron infusions for that and was fine in that respect, and my ferritin levels were restored to normal.

THIS time, my ferritin is elevated.  Again, the last few tests it was right in the normal range where it should be.  I don't eat much red meat (not a big fan and prefer a plant-based diet), and any protein sources usually include chicken and fish mostly, and on occasion... red meat.  My multi-vitamin does NOT contain iron because I'm in pre/meno so well, to be blunt, I don't get any visits from Aunt Flow or Uncle TOM anymore, not in almost a year now.  No need for iron in vitamins when this occurs.

Anyway, so... I have to see the blood doctor to find out why.  Not sure if timing is the key here, or if this is just a really good indication that I'm NOT dealing with hemochromatosis, which is iron overload.  I don't believe for a second I have that.  But it still is almost always due to liver issues.  Ugh.. which most of you guys know I already have (Autoimmune Hepatitis, or AI).

Thankfully my ferritin level is only mildly raised... but I was told it's still needs attention because it means my body is absorbing more iron than it should.  I do have to say I find this odd since I really do eat very little meat.  No telling wth is causing this, but... another wait and see situation I guess.

On another note---FIREFLIES!

I've seen a few of these little guys flying about lately, but there were MUCH MORE yesterday.... and that's beyond awesome!  I DO NOT EVER, NOR DO I THINK IT'S OKAY to catch them in a jar!!  They're population is dwindling---a very sad fact---so in the very short season of their lives... let them live!  They have to have firefly nookie to maintain their population!  lol Well, it's true!

So my front and back yard is covered with them in the evenings... and, the big light at the end of the driveway is being turned off.  It's billed to us, so we can choose to have it on or not.  We're choosing NOT to have it on due to artificial light hurting the mating process of these amazing creatures.  We also don't over-mow the lawn so as to allow as much of the population to grow as possible.

I.  Absolutely.  LOVE.  Fireflies.

Home.

One thing I've known for certain for pretty much all of my life is that when I'm ill, I long for home.  When I was little I knew where that place was, and despite its terrible flaws it was still home.  As an adult I was surprised to find that I no longer knew exactly where home was.  So I would spend the majority of my adult life longing for a place that quite possibly, for me anyway, doesn't exist.  I've never been able to reconcile this; not physically, and certainly not emotionally.

The closest I've come to being "Home" once moving out of my mom's house at 18 is Mobile, AL.  I had a tiny little apartment, and though not every moment there was perfect, it felt safe, and it felt like a warn welcome every time I walked through the door--no matter how good or bad things were.  It was a safe place for me to be myself, where I could decompress, where I could dream, wish, hope and feel alive.  This is not the case where I am now.  Not even close.

How did I get here?  I got here the same way I got into every bad situation in my life; By pure blind trust.  It's a flaw of mine and one that's gotten me into more trouble than I can tell you.  I give people the benefit of the doubt, take them on their word, and actually believe what they say.  Well, to a point anyway.  The thing is, that 'point' in which I pivot and see the error of my ways is usually far too late to avoid any damage to my life, and to me.

I'll probably always be this way, a far too trusting person.  I'm okay with that, I guess.  But I really wish I were better at assessing and discerning the heart and motives of people BEFORE I get involved.  We all have our flaws, I suppose.

As I wait for the sluggish process of diagnosis beyond the AIH, I'm left far too vulnerable for my liking.  There are days I can't walk well, verging on not at all, and days where lifting my arms to look at my phone is almost too much.  The weakness grows more each day and the doctors I need to see are weeks out of reach since I'll be a new patient.  The waiting is going to end me in the ER at some point, I'm afraid.  But the worst of this is being this sick and living in a place where I know absolutely no one at all.

T only helps around here bare minimum, and as the chores, etc. pile up... I long for the simplicity of the life I had in Mobile, where I didn't have to clean up after another human who refuses to do what's necessary to not live in a dirty, cluttered house.  I can't live this way, so I struggle to pick up the slack.  And I'll tell you, the slack is far far more than what T actually does.

How the hell did he survive on his own?

I have to somehow find my way home--wherever that is.  I know I can keep struggling a little bit to find my way here, to at least hang in there until I'm better---or at least better enough to survive, to move, to do something to help myself.  At this rate I don't know if I can work, which scares that crap out of me.  Disability requires a definite diagnosis, and at this time I don't have one that explains fully how I'm continuing to weaken and become more and more sick.  What can I do if even typing an entry like this makes me shaky and nauseated with weakness?

I want to be well again, to feel good again, to have energy again.  I want to be in a position where I can find my way back home again.

Home.  I just want to be... home.

"You're allergic to yourself."

Not going to be easy catching up, but I'll give it my best shot.  I spend most of my days in bed, sleeping, or waiting for tylenol to kick in and 'possibly' help with the pain.  Weakness is now stronger than my willpower, and fatigue is my constant companion.  I don't have much energy to type, or even sit at the computer long enough to.  So I'll try and get with it...

Appetite is all but gone.  Still not feeling actual hunger but increased weakness and headache that tells me I should probably eat something.  I usually have yogurt in the mornings so I can take medication, and I find myself full after just a few bites.  I've no idea why this is, why diminished appetite and early satiety is back and worse than ever.  I just know that it is.

Had my every-six-months echo on my heart about a week ago and just got results back.  I'm looking for another cardiologist at UAB, because the one I have now doesn't really discuss anything with me, especially changes.  I'm not okay with that given my family history and the other issues with my heart.

In six months time, since my last echo, my aortic valve has developed stenosis (none was found last time with echo or cath).  It had "trace" regurgitation last time, and now it's to the 'mild' level. Doesn't sound like a big deal until you realize that even this small change happened in 6 months time.  It's a watch-and-wait situation like my mitral valve issues.  Yay. Not.

You guys may remember I had a heart cath a few months ago.  This is when they found the mitral valve regurgitation had progressed.  The report had no mention of stenosis, but if there were any it may not have been worth noting perhaps (just guessing here).

So given changes, and the recommendation to now have echoes every 6 months instead of yearly, I would think the dr. would be a bit more, I don't know, forthcoming to at least explain to me about the changes and what they do or do not mean.  I sure wish Dr. Dewan was still my cardiologist... but he made a career move out of state.  Dammit.

Also went to an allergist.  Now this was the most surprising thing of all---after testing me for everything under the sun.. I'm not allergic to anything. lol  All the sneezing and sinus issues are merely seasonal changes and not from allergy.  Sounds like the same thing, but they're not at all.  This appointment was 3 hours long and with a LOT of discussion.  Doctor isn't just an allergist, he's also an immunologist.  After talking to him about everything that's been going on, the AIH etc, symptoms, etc... he spoke to me about the possibility of a Myositis problem (sounds familiar, huh?), OR Lupus.

He said, and I will quote him: "You're allergic to yourself."  We laughed about this a little, but he says that a lot of my nose and skin issues, that almost appear as allergy reactions, are most likely an autoimmune reaction.  The pink cheeks, that aren't normal for me, he says may be an indicator of Lupus as well.  Apparently, according to him and other research, Lupus is something that isn't really found during lab work via AI antibodies etc., although SOME people with lupus have that show up.  Many, most in fact, who have it don't have that show up in their blood until the disease is years progressed.

Oh, as an aside--I got a breathing treatment while at the allergist's office.  I was wheezing like crazy and the treatment helped!  I had a somewhat wet cough for a few hours, but dang... that was awesome! Not from allergy though, the wheezing and dry cough I have.  Lung issues.. yeah, there's still that.  Anyway, back to the point....

Now I have to see another rheumatologist, and an endocrinologist (because of prednisone withdrawal), and well.. that just sucks.  SO many doctor appointments.  I'm absolutely worn out.

Well, time I left this blog and attempt short entries on the others.  Honestly, my muscles are aching terribly just from typing.  When the hell will this ever get better?  :(

MIA

The last several days have been fraught with a fatigue and weakness unlike anything I've ever known.  Basically, for the last several days I've been pretty much bedridden, only able to sit up for a VERY short period of time.  Painful, tired, and weak, I spent what little time I was awake researching if there was a medication I was taking that could be doing this.  What I found was across the board complaints about every drug I'm on.  Narrowing things down to a time frame when I began getting worse I found that cessation of Prednisone and AZA kicking in were likely the culprits.  Here is where things get tricky...

Prednisone and immunosuppressants are the go-to protocols for nearly all autoimmune diseases.  At the highest dosage of 40mg/day I felt amazingly well, energetic, and somewhat strong again.  It was about as close to 'normal' I've felt in years.  With the first taper I began to feel badly again, but eventually had to come off with a slower taper which ended about a week ago.  AZA (Imuran) was added along the way and is something one is kept on long-term to stave off flares of the disease, in my case autoimmune hepatitis -- don't confuse this with visual hepatitis (hep C for example).  This is an autoimmune situation in which my immune system thinks my liver is a foreign body that needs, well, killed off.  Overlapping AI disease is also suspected here, but symptoms cross over and overlap to the point where it's difficult to tell what else is going on.  Myositis or Sarcoidosis are suspects here given my aldolase was highly elevated more than once, even on the medications.  It is within normal range since taking the imuran in higher doses.

FAST FORWARD...

I don't know which is causing this horrid weakness and fatigue, and other symptoms as well, so I opted to call the doctor to TELL him I'm stopping the AZA for a time to see if that's the culprit.  His response was agreement, BUT he wanted me to restart the Prednisone at 60mg per day!  I told the nurse on the phone, who relayed the message to me, that I wasn't going back on prednisone because the side effects were intolerable and it causes so much weight gain, which I've just now begun to lose.  I'm not going back.  She said she would relay the message to the Dr.  I have an appt with him next week and know I'm going to have to give push-back because I'm UNWILLING to take prednisone again.

I've just stopped the AZA yesterday and am not doing well as I'm still weak, fatigued, and wanting to sleep most of the day.  I have a feeling some of this will improve as the AZA leaves my body.

I know the risks.  I know and accept that I could have a big flare of AIH and my liver could be damaged because of it.  But here's the thing: I have to wage longevity with quality of life, and in doing so have come to the conclusion that I simply can't have both.  I'm choosing quality over quantity.

And hey, for all I know it could take a couple of years before I have a flare again.  But as for any other AI disease going on, be it Myositis or Sarcoidosis, no one has given another diagnosis as of yet so there's little reason for me to worry about those possibilities.  Having been on the treatment protocol for those, because it's the same as AIH, it's going to be tough trying to diagnose either due to my taking prednisone and AZA for this long.  Even so, all I can do is see how it goes moving forward.

I'm actually quite surprised that I can event type, because the last several days I've barely been able to hold up my iPhone while laying in bed due to the weakness.  You've no idea how bad the weakness is.

Another thing I have to deal with, which I'm not sure is a bad thing, is the loss of appetite.  I mean, I've gone back to FEELING that I need to eat, where my body gives physical signals that I may need nutrition but don't have actual HUNGER.  Also, this is the third day where it's not just a lack of hunger but also very early satiety.  I've been taking in less than 1,000 calories a day, which I will pay for dearly if I'm not careful, especially if I'm dealing with Myositis.  But that's another talk show.

So for now just know I have to play it by ear and see how I feel, because I may not be able to post here every day---though I do hope I can because that means I'm either feeling better or one tough chick for posting when I feel like I'm going to fall off the chair any moment. ;p  C'mon.. that was funny.  See?  My sense of humor shows up every now and then.

How am I managing through all of this?.... well, I have to admit that's a whole other talk show....

I can hear it in my dreams.

What was.  What should be.  What was lost.  What is.  An unsettling representation of what I'd rather not think about, a rejected idea of what life is supposed to be.

I sometimes see images online, hear stories from people, stories that pique my curiosity in that I see and hear I can't connect with in any real way.  "So this is life?" is the outcome, the question that remains unanswered but accepted just the same.  My reality, my life doesn't in any way reflect what I see out there in the world.  This kind of thinking only leads to a pointless series of "What if?" scenarios that didn't, nor will ever, ever happen in what remains of my lifetime.  Such a useless response, isn't it?  I definitely think so.

I've gotten to where I really hate dreaming.  I hate waking up from them even more, to be honest.  Again, I find them completely useless.

Damn.  When will the clouds lift?

The Handshake.

A relationship is like a handshake.  One person extends their hand and the other extends theirs in acceptance.  This is the best case scenario, however, and relationships leave one person waving their hand in the air and feeling foolish.  At some point that dance just doesn't work anymore and we have to decide wether it's all worth it or not.  But how do we know WHEN it's time to place our hand back in our pocket and walk away?

There's no difference in friendships and we've all seen those fail miserably due to one-sided participation.  It's not usually an instant fail, btw, and we come to the conclusion to walk away after a lot of energy is spent trying to be the one acquiescing, initiating, or taking the blame for the short-comings within the relationship machine.

So if we know how it works in friendships, why do we take so damn long with romantic relationships?  I think part of it is that there's a much larger prize at stake when it comes to that kind of connection that leaves you ultimately vulnerable and exposed.  That other person, unlike a friend (usually) has seen you literally at your worst, your best, naked, knows most if not all of your secrets, and the love and affection that ties it all together is not that easy to break.  In most cases.  Either way, there's just a lot at stake when talking romantic relationships vs friendships.

Friendships do last longer.  And if you think about it, it's most likely because you're not living with that person or trying to divvy up responsibilities, not relying on that person when it comes to the hard times.  I mean, yes, there is some of that, but again.... you just can't compare the two.  There is an exception, however, to this rule, and that is that we actually can apply what we are willing to put up with when it comes to carrying the load of that relationship.

I don't care about the numbers, myself.  Wether you call it 50/50 or 100/100 it still requires both sides to assess what's what and decide a compromise when one side is no longer able to carry the larger portion of the load.

My point here is this: At some point we have to acknowledge when something is harming us, wether it's physical or emotional harm, be it stress or overt abuse, we absolutely HAVE to make a decision at some point while we still have enough of ourselves left, before any real long-term damage is done.

Every day I'm reminded of how much I have to carry, what I'm left to be responsible for, and just how little energy and strength I have to take that on.  Physically I grow weaker each day.  My specialist has upped the Azathioprine about as high as I can take it, and I'm waiting to see if/when this begins to pivot the illness and begin to heal what's wrong.  In the meantime I'm extremely weak, often sick (nausea, etc.), and I have to lay down in bed several times a day now.  This means little gets done because I'm not able to do it myself.  Simple things, really.  Chores that I could handle easily back when I was healthy, living alone and with many more time-consuming responsibilities.  The difference between he and I is that I did what needed to be done and was glad to do it.  I can't live in a dirty or nasty environment so fight my way through the day trying to do what little I can.

I'm so so so done with this.

And since the communication is one-sided (out of his laziness. No joke there.) I'm beyond exhausted. I'm back to my focus being on ONE thing and ONE thing only--getting well.  I will be well enough to take my life back when the time comes and he's going to find himself in the dust when it happens.  It's his own doing, and he's not going to be happy about it when it happens, I promise.  He's been warned of this, and he's coasting along like he can't see it happening already.  But it is, happening already....

The Status Quo.

It's been a week, and this entry is going to be brief and probably more than a little boring.  My goals, as I've spoken about often, are to purge thoughts, etc. in my blogs.  As of today my thoughts are fairly off, meaning I'm having trouble really understanding what it is I need to talk about.  This dullness becomes the color of all of my life these days as the prednisone withdrawal wreaks absolute havoc on my body; This is the worst thing I've gone through to-date.

While I know that withdrawal will bring miserable consequences, ones that often can't be avoided, the possibility that there is something else going on is [possibly] evident in what I'm experiencing.  Could it be that the withdrawal symptoms are simply symptoms of some other unknown problem yet to be discovered?  My liver Dr. seems to think so.  But damn.  I can't deal with this much longer.  Someone needs to get on finding out what the hell is kicking my ass SO badly that I have no quality of life anymore.

As I type this entry I have to lean my forearms on the laptop, putting my arms at my sides often as well because I simply cannot hold them there for long.  This weakness is hardly tolerable on any level.

I'm simply too weak to keep typing... just wanted to check-in...

This is really getting ridiculous.

Weak...

It's hard to post entries these days with the growing weakness in my limbs.  Even holding steady with Prednisone dosage the weakness just seems to take over everything, seemingly unstoppable.  I've made major adjustments in my diet, opting for extremely bland food and following a diet that's supposed to help a sensitive digestive system.  I've also stopped one of my medications for reflux (I'm on 2) because it can cause GI issues.  So far I've not seen a lot of improvement, but 'some' improvement is definitely better than nothing in that respect.  Still, the weakness is really taking over things, and I have to say.. I'm really sick of it all.

I dread waking up in the morning.  Sitting up on the side of the bed takes great effort, and lifting my arms to dress, etc. is becoming something I have to 'will' myself through.  I long for the days when I could bound out of bed, ready for the world and whatever the day holds.  This weak and tired person I've become I don't recognize, and yet here I am literally willing myself through what few tasks I'm able to do.  When will these doctors get to the bottom of everything?

Yes, the Prednisone and Aza (Azathioprine/Imuran) have helped SO many symptoms, brought my liver enzymes back into the normal range, but symptoms that persist have obliterated my quality of life almost down to zero.  What's next in the quest for 'healthy'?  I'm doing everything within my power to propel myself towards feeling better, healthy, vibrant--but my body isn't responding to anything and simply grows weaker by the day.  I've no idea what to make of it all.

The liver specialist I'm seeing remarked early on that he thought there was something else going on besides the AIH, remarking on elevated aldolase, which remained elevated even while on Prednisone.  My aldolase levels only returned to normal with the addition of Aza... not sure what that's about, but I know testing for myositis at this point is futile due to my being on prednisone and Aza--the two main drugs to treat myositis.  *sigh*

Well, my arms have completely given out, the muscles hurting badly as I type....

I'm out for now...

This is one crazy ride.

Seems like I spend most of my time in speculation regarding my current circumstances.  If there were any other direction in which to channel my focus I would certainly do so.  I mean, no one likes to be bombarded by the kicks, knocks, and out-right punches life sometimes dishes out, and when these are broken by even an occasional time-out then... well, rest and recovery is the only real way to make withstanding the worst possible.  Not to say we're destined to buckle under the onslaught, but it certainly makes it easier to get back up when you have the strength and clarity to do just that.

I'm a bit lacking on the strength and clarity thing these days.

Introspection is the name of the game these days, and I've gotten pretty damn good at being able to look at myself and ask the right questions.  The answers to my questions, however, are a bit harder to find as the questions themselves seem to shift and change and grow more numerous by the day.  Still, looking, asking, and listening for those important responses from 'self' remain the most important part of healing; for me, this is absolutely essential.

Yeah, it's one of those days where I've yet to determine the course of my life.

I'm freaking lost (no surprise there).

Cold.

I'm in freezing mode--just one side of the coin of prednisone.  Withdrawal is kicking my ass and giving me issues (duh), so I don't have but a moment to post here.  Just checking in, more than anything.

Physically, I feel like crap.  Emotionally, I feel like crap.  My whole reason for getting out of bed each day is simply to take care of my dog and ferret, and.. well, pretty much to try and push-back against this depression that's trying its damnedest to win.

Really not doing well today.

Not at all.

I'm going to try and post again later...

Seven Days.

It's an important number to me.  Every 7 days my dosage of prednisone decreases.  While I'm tapering from this extremely powerful drug I experience many unwanted side-effects, much of which I can't differentiate from AIH symptoms.  At 5mg/week my body became my worst enemy, leaving me unable to walk from the living room to the kitchen, making it difficult to walk the very short distance from the room I have to sleep in now to the nearby bathroom.  From unshakable episodes of freezing to feeling as if my body is going to melt into a puddle, I never know from one minute to the next what I'll be dealing with.  The turning point for me a few days ago was waking up before the sun in the throes of a migraine.

Tapering 5mg/week was simply not going to work.

Another call to the dr. and I'm told to go back up to 7.5mg and taper down at 2.5mg/week.  The morning of the migraine I discovered that with that 5mg dosage the migraine would go away, and it was that same evening that I added the additional 2.5mg.  While this seems like numbers and boring, dry information, I promise it's much, much more than that.  My entire quality of life depends on a tiny little pill that had the ability to make or break my life in every way.

On one hand it's a life-saver, and on the other it's dangerous as hell.  It's the drug people with AI diseases love to hate.

The usual thinking on getting off prednisone is to slow the taper the lower the dosage gets.  I'm unsure if I will be able to go down to the 5mg again, but I'll certainly find out next Wednesday.  Just how I'll find out is yet to be seen.  Will I feel better?  Will I feel worse?  Will there be debilitating symptoms again?  Or will everything go smoothly?

Without answers I can't make plans.  With each day being a giant mystery that unfolds one minute, one hour, one symptom (or lack of) at a time I am no longer really in control of my life anymore.  Prednisone now determines everything---basically, it's made me its bitch.

I can be honest about this.  I have to be honest about this.  I'm willing to face this head-on even if it means I'm the recipient, on occasion, of a TKO by a drug that is supposed to save my life.  I'll get up, face another day (albeit at times unwillingly), and keep going.

All of the above has affected my life.  Okay, I accept that.  What I don't like at this time is no support network, no one listening (not including who reads here) when I really need to talk.  If I could just feel good, be without pain, lead an normal life, I can handle the other stuff.

In the meantime I'm ticking down the hours in those 7 days to reach toward that goal of being off a drug that whispers it will save me, while making me feel as if I'm dying.

Seven days at a time... we'll see where I will be when I'm finally free of the prednisone shackles.

We will see...

Migraine...

Just when I thought I would be writing about something OTHER than this whole Prednisone experience, I end up with symptoms that will land me in bed the entire day.  It's a good thing I like coffee, because when it comes to migraines... coffee does help.

Then there's the nausea.  With prednisone withdrawal and migraine comes nausea.  It's a very bad day, I can tell you.

I took the 5mg dosage for the day, gagged down a little food (you MUST take Prednisone with food), and am praying that little bit will ease the headache.  So far, the headache is a little better than it was when I woke up, but I don't know if it will return when the Pred leaves my system (had a very short half life).  I can only hope and pray and leave my bed un-made and waiting.  Trust me, I'm going to end up back in bed VERY soon.

I'm also freezing.  This was also the case yesterday, and it's been like this off and on for the past week; also another side effect of Pred withdrawal.  There's just so many of them, and NONE of them are even remotely pleasant.  I'm waiting to find out from my doctor if I can taper off more slowly... much more slowly.  I can't just be an invalid until my adrenal glands catch up.  That won't work at all.

So how in the world am I handling this?  I'm not.  Just being honest here---but I'm not handling this at all.  Am I trying?  Sure.  Of course I'm trying, and I'm trying as much as my body will allow.  That's the best I can do; that and forgive myself for not being capable of doing the things that need done.  My animals are well taken care of, so that's the most important thing.  Dishes can wait.  Sweeping can weight.  The rest is incidental.

What I'd really like to see happen today is the cessation of this migraine (totally), allergies calm down so I can breathe better, and to be able to relax, actually relax.

...I'd also like a new pillow.

So Incredibly Weak.

It's been a few days, hasn't it?  Tapering off Prednisone is kicking my ass.  I'm so weak, cold, tired, dealing with nausea.  I'm about to go lay down for a bit, cover with a snuggly blanket and try my best to warm up and feel better; I really don't like that this has become my current 'Norm.'  When, oh when, will this start to improve?  When will I be able to re-join the land of the living again?

No answer...

I just can't sit here anymore...

Perseverance is Determination on Crack.

On occasion I'm reminded of just how little my mind is okay with what's happening in my life.  Sometimes it reminds me that those things I can't do at the moment are weighing heavily, and so heavily that I'm struggling to maintain on a daily basis.  While I understand that this won't be forever, my being so damn limited, it's still wreaking havoc in my waking hours, as well as in my sleep.  How to get past this and find peace is going to be a process, and one that will require much patience on my part.  And oh, but I don't have much patience these days.

I'm not willing at the moment to go into details, and mostly because I just don't have the energy for explaining everything.  All I know is that my physical limitations right now are driving me crazy, anchoring me to this house, and preventing me from ACTUAL living.  I can't engage in anything these days and have become mostly a non-participant in my own life.  How the hell is that going to work as I wait out the too-slow process of 'normalizing' my health?

Perseverance is determination on crack.

I fuel the fire with caffein in the morning, then take to my bed when my body can no longer handle sitting upright for any reason.  My days are measured and sliced by how many times I have to lay down in order to get back up.  Yeah, you heard that right.  If I do even one small task that requires the most minimal of effort I'm wiped, totally wiped of energy, stamina, and I'm laid out for a few minutes---to hours.  I never know what I'll end up with, energy-wise, strength-wise until I'm done doing whatever it is I need to do.  Oh, and those tasks that drain me... they often consist of just walking from one room to another.

Now, I will say that I believe a lot of this is because I'm coming off prednisone and at a relatively fast rate.  The damage of being ON the stuff has concerned my liver specialist, so he wants me off asap.  This happens with consequences.  The immunosuppressant I'm on... Aza (aka Imuran/Azathioprine).. is on board enough now where it should be helping me come off the prednisone with few side effects.  Problem is, I'm sensitive to medications, always have been, and I tend to get most of the side effects.  yay me. NOT.  It is what it is.  Either way, I'm trying my best to persevere and not give up, despite the side effects and discomfort and depression.

I'm trying....

Shhhhhh.

It's quiet.  I like the quiet and often prefer it to even music at times.  Listening for guidance, watching for signs of life in an otherwise empty space, not knowing whether to trust my instincts and give in, fight--these are every day experiences for me; sometimes by choice; sometimes by chance; but always for a reason.

I'm heading to my oasis in a moment, a room I use as my 'Girl cave,' a place that is inherently me in all it contains, inspires, and presents.  My own place where I can retreat, nap, contemplate, and create if I had the energy.  It's a good place.  A very very good place.  I feel at home in there, more at peace. It could just be the decor, all the familiar items from my former life of 2 years ago, the soothing familiarity invoking that feeling of "Ah."  It's really my space and I am very protective of that space, I promise you.

So I took that Lasix for the first time a little while ago and am waiting for it to kick in.  This means I'm retreating to my room where I can be near a bathroom... yeah, it's a very powerful diuretic, prescription, and boy is it going to keep me busy this afternoon.  It's okay.. because it's needed to combat the prednisone water retention, which is making my BP shoot up in the are of 194/82.  NOT a good BP reading.

Time to head into the other room...

Okay, bladder... let's do this!

Yikes!

That Deleted Post

Okay, as you long-time readers/friends know, I often delete posts.  The last one is a bit too sensitive, so I decided to delete it until I learn more.  Yes, it's health-related, but I don't know anything about what it actually MEANS right now.  Best thing, imho, is to just let it be until I have a better understanding about what I'm dealing with.

If you read the entry before I deleted it, then you know what I'm talking about.  Given that, once I learn more I'll update.

Sheesh.

I really need a nap.  Seriously.  Life just has to get easier than this crazy rollercoaster I'm on at the moment.

$260+ Prescription and Epic Failure So Far

Maybe.  Maybe not.  Has it been enough days?  How long will it take?  WTH?  Without actually going into the failure of a very expensive medication, and without talking too much about the why's and wherefores of it all, I still have to get a few things off my chest with regards to where I am right now, today, tomorrow, and the rest of my life.

Let me start by asking the burning question: "What life?"  Yes, I'm breathing.  Yes, my heart still beats.  But there isn't any quality of life at the moment.  Now how is it that I'm supposed to do anything other than 'will' myself through each and every day when there LITERALLY is NO quality of life?  How do other people do this?  Oh, and I've looked, trust me.

I see videos, read blogs and articles and forum posts, and I just can't really connect with what they're saying, what they're talking about.  I don't understand what the hell is happening to me right now with all of this muscle weakness and shaking, which at times feels like I can't stand or walk.  Where is this coming from?  Medication?  I see no one really talking about this anywhere, and what weakness etc they may feel isn't enough to shut them completely down like this.  And I see people who are still able to get through their day and take care of common tasks, ones that are now nearly impossible for me.

What gives?

I keep looking, keep reading, keep learning, keep hoping and believing this will eventually get better. But there's one little problem with that method of 'coping,' and that's this: I have no real grasp on what "this" is!  How can you look for a solution, remedy, or cure for something that is yet unidentified?  You can't.

Yes, I know and understand I have AIH.  I get that. I'm on medication for this AI issue and hope remission will be quick.  I realize it generally takes 1.5 to 2 years for remission to be in place, so I'm prepared for that.  But these symptoms... wth?

My first week on prednisone was AWESOME, and I may have overdone things a bit, I admit.  Maybe the 8+ hours a day I spent that first week of feeling really great triggered something with the muscles?  I had chilled out the following week after the first taper because of the return of symptoms.  And yet while my dr increased the dosage again for a short while... it didn't help.  Did I trigger Myositis to flare up?  Is Myositis the other problem?  Doc seems to think so.  Damn.

OMG, seriously... I can't stop thinking or talking about this.  See, this is why people need a diagnosis of SOME kind, because GUESSING or WONDERING wth is going on can drive a person nuts, especially when it's gone on too long.

Geez.... Shut up brain! :/

Focus, Please.

Reaching for something to focus on when you don't feel good is probably one of the most frustrating experiences ever.  Well, that is for someone who doesn't have a support system.  With family and/or friends involved, dealing with the known and unknown of chronic illness becomes a little more bearable in that there is always a soft place to fall.  I mean, anyone who deals with autoimmune disease know that falling isn't an option, but an inevitability.  Not accepting that as a fact means being blindsided when it happens.

Nope, I'm choosing to have my eyes open.

That fleeting sense of good health isn't enough to sustain me, and those temporary little flashes of what once was don't occur often enough to sustain me.  This is my new reality, for now, and it leaves me with not much of anything to focus on, anything to sustain me, anything at all to give me that emotional fuel to keep moving forward as quality of life diminish.  Oh, it's not as depressing as it sounds, because I've only just begun treatment and have yet to see where it takes me.

Escape is the only thing I have at the moment.  My methods are at least reasonable, providing me with enough distraction to carry me through the day.

Coffee, which infuses something akin to 'energy' and 'wakefulness' to start my day.
Music, the vessel in which I use to retreat when the weakness is too much.
Reading (Kindle), when I need to turn my mind completely off to what's at hand.
Sleep, which now gives me little respite.

Lack of focus brings the need for escape.

Oh, don't get me wrong.  My every waking day is filled with one real focus in mind, and that's eating right, getting a handle on the Prednisone hunger and other sides, and remembering that I have to get back to me again, to SOME semblance of health.  What I need is what comes with true focus, and that is the driving force that takes us along that path to our ultimate goal.  Without that energy and vitality focus fades and the lines between what I want and what I'm going to get begin to blur.  And trust me, it's not good when this happens.

A few mantras run through my mind every single day, and the dialogue rarely changes.  At times I give in to those random thoughts that this is it, this is the REAL 'New normal' and I can't fix any of it. There are times when I want to give up COMPLETELY and just let whatever happens happen.  There are times when pushing myself so hard to do simple tasks just drains me, and the world shrinks away from this very small space in the world of which I've unwillingly taken up residence.  In those hours, and they are hours, the despair is real, the weakness is real, the waning health is real, the isolation is real, and the realization that I'm NOT in control is very, very real.

And then suddenly denial sidles up, elbows me and says... "Are you sure?"

The only thing I'm sure of is that I'm caught perpetually in that swinging pendulum that smashes against acceptance and denial.  And honestly, I latch onto denial more often than not, and I'm pretty damn sure that's not the smart thing to do.

Confusion in all of this sucks.  It just sucks.

More research.  Continue treatment.  Say the enemy's name and say the words out loud if necessary....