Well Crap...

Honestly, I wasn't going to make another entry today, but some major symptoms of perhaps an overlapping condition reared it's head in a HUGE way, prompting me to call my liver doc again.  I'm sure the guy is about tired of hearing from me about now.  He knew there were two situations, both of which is being treated as a separate entity since that's what we believe they are.  Treatment for the second GI issue seemed to be working since my first dose Monday night, but today... it all changed in a VERY dramatic way.  Trust me when I say, I'm going to spare you the details for your own good.  Let's just label it "IBS" and go right the hell on past that and pretend we don't have to actually think about what that is. ;)

Either way, what drugs I'm on.. two should be helping with this, and the other (Imuran/Azathioprine) can actually cause the problem.  I'm aware that dietary intake can have an effect on things, so I'm nixing, yet again, ALL dairy from my diet.  Or most dairy.  I'm not sure this is the problem yet since I've not seen an actual pattern here.  And yes, I had to come off my vegan/vegetarian diet a few months ago due to iron-deficiency anemia (Not diet-related).  Healing took precedence over my ethical reasons to abstain from eating animal products.  That being said, I'm not sure how long this is going to last in light of the recent upswing in certain IBS-like symptoms.

Initially I was to be one two different medications related to these symptoms, as my hepatologist believes there is a large possibility I'm dealing with a gut bacterial overgrowth.  SEXY, huh?  Well, thanks to my insurance and FREAKING OBAMACARE changes, my insurance company refuses to pay for the $1,200.00-$1,500.00 medication.  That's just ONE medication.  Why can't I take something cheaper?... because I'm on a blood thinner and most of the medications in that class can cause serious bleeding events when taken with a blood thinner.  So I've been waiting for a month now to find a way to get the medication I need, as the symptoms continue to grow worse, and more intense.

The reality is that this IBS-like condition, and I'm calling it "IBS-like" because my doctor still believes it's bacterial in nature and not a disease process.  Once treatment can be started then we will see if things resolve.  But when the hell will I get to actually TAKE the medications?  THAT is an ongoing problem.  On an aside, I did finally resolve my problem with my blood thinner going from a $25.00 2015 cost to a $361.00 2016 cost via insurance, and because my insurance refuses to pay any portion.  THANKS OBAMACARE!  UGH.  I found a Rx copay card application, finally, on the drug manufacturer's web site, signed up, and now my medication cost's a whopping $10.00 per month!!  I'm very happy about this and relieved as well.

So the secondary issues that comes with the IBS-like symptoms involves a lot of bleeding.  Yeah, yeah.. I know this topic is gross, but it's one a lot of people have to deal with, and if anything at all I say here helps even ONE person, then I'm going to talk about it.  So anyway, the bleeding issue is worse because of the "attack" I had today.  And oh boy, I really wasn't expecting this attack to be as severe as it was.  I'm sitting here at the moment pretty much scared to eat anything.  Yeah, even the accelerated hunger from the prednisone can't even break through that fear, and for good reason.

The nurse I spoke with about this new event hasn't called back, but my Hepatologist is a very popular doctor and is extremely busy.  They always get back with me, but it may take a little time.  They may be contacting my insurance again re pre-approval for that drug I desperately need to take, or possibly take care of this problem.  Is it related to the AIH?  I've no idea.  But it's being handled as a separate entity.  I don't care how it's handled as long as it's handled and I can get it resolved.

Of all the things I despise, I honestly have to say that Barrack Obama has all but destroyed our once fairly decent health care system.  Pledging to make health care/insurance available to ALL of us, what he ACTUALLY DID was FORCE people to buy insurance they can't afford or face severe tax penalties for not complying.  Furthermore, it forced the hands of health care providers via insurance changes to make up for the new system.  What an F'ing disaster, and one that has far-reaching repercussions for anyone who had insurance to begin with.  Not only that, but I still couldn't get or afford health insurance even when I wasn't insured.

In the meantime I'm dealing with debilitating symptoms and blood loss.  Seriously, any wound that bleeds is a problem when you're on a blood thinner.

....And don't get me started on the excruciating lower back pain... I won't even venture a guess as to what's causing that.

Crap.

Crap.  Crap.  Crap.  Crap.  Crap.

Break out the fava beans and Chianti...

Ok.  Ok.  Just kidding.  First of all, the pic of the flowers (yes, enhanced for artistic effect) were given to me by T yesterday.  I have to admit I was very surprised, but he said he knew I wasn't feeling good and wanted to do something for me to make me feel a little better.  The gesture is incredibly sweet, and it comes on the heels of some news.

As you may know from reading other posts, and/or my other blogs, I had a transjugular biopsy on my liver a couple of days ago.  Yesterday I received a call from my GI/liver specialist's office telling me he wants me to have an ultrasound on my liver on Monday to double-check some things because they found elevated portal pressures (hepatic portal vein).  I told T I had an ultrasound scheduled on Monday (also have another appt with my hematologist at the same hospital) and why.  I guess maybe he's getting the idea now that I'm not making up symptoms and that I really do feel this bad.

This is the most difficult about having chronic illness, or just an illness that doesn't present with something you can see clearly with your eyes.  Many times there are signs and clues, such as deepening dark circles under and around the eyes--to the point where it looks like someone hit you in the face, maybe the person's eyes look 'duller' and less bright and 'open,' or maybe it's a number of things that, had you not seen the person for a while would startle you.  Too many people suffer with different illnesses and are often not believed, shrugged off, and worse... because they can't SEE everything going on.  Even with a diagnosis it seems that, unless it's cancer, etc., no one believes that you can be extremely sick and still be able to stand.. at all.  I simply don't get this brand of compassionless thinking.

I'm not going to focus on people who lack compassion or the ability to try and understand what they've not experienced, so I will leave my thoughts on the matter as-is.  Right now my focus, my goal is just to continue to wait for test results in order to get answers, as well as solutions.

Staying in a peaceful mindset is going to take a bit of work today.  I'll keep trying just the same.