DNA results... OMG! Shocking!

So I did one of those DNA test things where you find out what the hell you are exactly.  And, as suspected: 70% Great Britain, 17% Ireland, 4% Italy/Greece, 3% Europe East, 2% Iberian Peninsula.

I won't go into the 'trace' nationalities because the margin of error can mean it may or may not apply.

One thing is for CERTAIN though---I'm probably the whitest chick you know!  lmao! So in honor of that, I give you this! ;p

Not managing this at all.

Because my blogs are divided by focus, I'm not going to rant here.  Instead, I want very much to try and focus (TRY being the key word here) on what I want, hope for, dream of, and very much long for.  I guess you could say that while I don't know exactly what all those things mean at this point.. I still have a feeling inside that points to a particular direction.  Got that?  Yeah, well.. I'll try and explain.

In a nutshell--I'm still very sick, and most days I'm literally bedridden.  I've stopped four of the medications I've been on, MUCH to my Hepatologist's chagrin, in an attempt to do what the medical community (thus far) has been unable to do---return me to health.  I've even attempted a trip to the ER (not easy, mind you) and all I saw was a nurse practitioner (not a doctor) who did blood work and told me it was fine.  "Fine?" I thought.  I'm bedridden, have nausea ALL of the time, in so much pain ALL of the time, unable to move or walk or stand and can barely make it to the bathroom on my own.  And yet... I'm... "Fine."  What the hell does that even mean?

Some days are better than others, and some days I literally wonder if there's something inside of me actually siphoning off my life.  Who can be this sick 24/7 and believe they'll live for much longer?  I'm not joking either.  Pain is one thing.  Fatigue is one thing.  Malaise is one thing. Weakness.. nausea and loss of appetite.... where in all of this is anything pointing to 'normal'?  There isn't, and my gut is sending out warning signals, big ones.  No, I don't think I'm going to die.  I don't know what's going on at all, so I can't guarantee that something bad isn't happening.  I just don't know.  Nor do the doctors.

I have bad days, and I have unbearable days.  Today is bad, but it's somewhat bearable.  I try to move, to do SOMETHING, even if I can't work out/exercise right now.  It changes nothing.  But I still try on the days I can.  It just feels as if I'm spinning my wheels in the mud and sinking.

So---it actually looks like I'm going down that other road here---you know, talking about anything but hopes and desires.  There's something in how flat the latter falls when I think about them that's holding me back from talking about it.  As if in some way I don't believe that there is hope, that all desire for life, living, joy has simply dissipated in the BS.  And I've not even spoken of the BS yet.

I need to be healthy so I can leave.  There.  I said it.  There are things I can handle, and things that are a complete deal breaker for me.  If something directly affects my quality of life for the worse.. THAT is a deal breaker.

In many ways the details don't matter.  All the clutter of what's wrong has turned into a mountain I can't climb and have stopped trying.   Taking matters into my own hands and acting in my best interests has come the priority.  Putting T's interests and priorities ahead of mine this long has all but ruined my life.  This is a pattern of mine and one I thought I'd broken.  I put everyone else in my life far ahead of me.  When it comes to my kids (grown) I'm still that way, but when this happens to someone who also has only their self-interests at the top of the totem pole, where their needs, wants, etc. are top priority---the imbalance eventually tips the scales and the whole thing comes crashing down.  Boy does it.

I'm not okay with what's happening and haven't been for some time now.  As my health deteriorates I'm forced to take inventory on everything in my life, and I mean EVERYTHING.  What it's boiled down to is that I MUST get healthy and regain my strength so I can put this relationship out of its misery--MY misery.  T just wants things to keep going as they are, and I just can't do it anymore.

So that's where I am.  Sort of.  I don't feel well enough to put it all out there at the moment.  However, I may try to make an entry in a bit about what I do want, long for, desire, and hope for.

......

Then I believe, Then I don't.

And what I'm left with in the end is--not a single answer, solution, nor any real strength to wait until the next step reveals itself.  Over the span of more than a month now, ever since titering off the prednisone, my body has become my worst enemy.  It's weak when I need strength, it's 'loudly' painful when I need peace, serenity, rest.  And for the life of me nothing seems to get better as the days pass one after the next.  Nothing, it seems, is working.

There is hope, right?  People always say "There is always hope."  But the time for continuing to believe in something that has yet to be true--is coming to an end.  Once again, though most want to help, doctors are throwing up their hands and telling me--they don't know what to do, what it is, or how to help me.  I still have one last appointment, with an endocrinologist this time, who may be able to help.  Is this going to be my last hope?  I don't even have the strength to ponder that question.

So in this "New normal" of mine, real life doesn't exist.  Nothing beyond the windows means anything, and all inside this house can continue to collect dust in it's blooming irrelevancy.  Honestly, I've never experienced ANYTHING like this before and don't know what it is I'm dealing with.

I have no appetite whatsoever, and food doesn't even taste good anymore.  You'd think I'd get some benefit from that, like weight loss.  But no, thanks to the prednisone after-effects I can eat less than 1,000 calories a day and not lose a single ounce.  yay.

You're probably thinking "Oh, that sounds just like depression!"  Well, perhaps.  Except.. depression makes it so you don't WAN'T do do anything, go anywhere, and while it comes with physical pain, etc... what I'm dealing with isn't quite like that.  Oh, I GET depressed--but who wouldn't?  My mind and spirit WANT'S to do things again, not spend most of my time in bed (literally), wants to go places, take my camera and explore, and have at least an ordinary life if not an extraordinary one.  The DESIRE is there, buried deep beneath weakness, fatigue, pain, nausea, and so much more.  It's there, but it's being held hostage at the moment.

My life now, day by day, is marked by two thoughts: Morning: "Maybe today!"  And evening: "Maybe tomorrow!"

Is THIS my new normal?  Is this all there is, all I have to look forward to?  Will I ever feel good again?  Will I ever feel anything but pain, fatigue, and discomfort?  Will I ever have JOY again?

Will I EVER feel good or experience joy again?  Will it always be about pain, misery?

Will I really have to spend the rest of my life feeling like I have the worst case of the flu 24/7?

Will I ever... get answers to those questions?

Carrying on, but on a different path of approach...

So, as you guys may know (if you read my entries) my health has been chaos over the past year or so.  Okay, so before that too, but lately it's hit a whole new level of 'bottom.'  It is what it is.  Recently, due to being pretty much bedridden I began to wean myself off as many medications as possible, and so far... it's not helped.  But I think what's left to explore is possibly key.  About that in a minute.

I'm on a few medications.  A blood thinner due to a TIA in 2013 attributed to Afib, etc. I had ablations for 3 arrhythmias.  Two different medications for GERD, two different medications for (embarrassingly) chronic IBD, a statin, Prednisone and Imuran for AIH.  Over the past week I completely ditched the statin, and I ditched the Imuran shortly after weaning off Prednisone.

Yes, I'm at risk for a flare up of AIH by stopping the Imuran.  I don't care.  QUALITY of life is far more important to me than how long I live.  It's a weird thing to have to face that reality, but.. there's a chance the AIH may not flare again for a year or two.  We'll see.

So where I am, briefly because I feel horrible and am weak, is in hormone hell.  After taking the Prednisone for 3 months that has likely suppressed my adrenals, which affect other hormones...

Okay... sorry, but my arms are aching badly just from typing.

Sheesh.  More later.. I hope.