Another Day, Another...

When will the dialogue ever change?  It WILL change, the question is WHEN?  I'm fighting against the 24/7 prednisone hunger, the relentless bloat, water retention, swelling.. and dammit... no matter what I eat or don't eat, nothing actually changes.  This drug has taken the wheel and is recklessly steering things headlong into the abyss.

I'm going to make this as short as possible, but I vowed to make entries here so I can see where I was and when and what was going on at the time.  Weight loss isn't going to happen in the midst of weight gain.  Some people are very fortunate to not be on prednisone long enough, or have a dosage high enough, to cause too much damage.  But for those of us who have to endure this, the hell of having to choose between what happens WITHOUT treatment for AIH and WITH isn't really a choice at all, unless you have a death wish.  UNtreated AIH has an average 5 yr survival rate in many cases, and less than 8 when it comes to terms of cirrhosis developing if it's absent at the time of diagnosis.  Those are ugly odds.  So we take our medipoison and hunker down for a long and rough ride to remission.

Diet--meal planning--cooking--eating--and my body's reaction to any of those differ from one day to the next.  And by the end of the day my body is NOT my friend.  It's another day in prednisone hell and I'm not handling this well for the most part.

I can't define the excruciating back pain that came on board almost two weeks ago.  I've felt it before, and it went away quickly when I received 2 IV iron infusions for anemia.  So is the anemia back?  Why won't any of my doctors test for ferritin again to check this?  SOMETHING is causing severe back pain that even prednisone can't touch!  That's kind of a big deal since prednisone is often prescribed FOR back pain!  What gives?  I may end up having to call the hematologist to see if I can get re-tested based on symptoms.  It's a simple test done right in his office, and though the results take about 3 days to come back.. at least I'll know if low ferritin and/or iron in my blood is to blame.  Because honestly, this sucks worse than the AIH symptoms.

In the meantime, I choose what I eat based on how long or IF I'm able to stand there and cook, make a sandwich, etc.  Yeah, it's THAT severe.

It's just another day in my life on planet earth...

Infusion Confusion and Various Other Junk and Stuff

One step at a time.  How many times have I said that statement?  Well, I'm still in the process of figuring things out.  Or, at least the doctors are figuring things out.  Either way, though progress looks slow, it's still progress.  I'll take it.

Saw the hematologist this morning.  He ordered new labs to re-check my ferritin level so we can proceed with addressing the low iron/ferritin.  The levels have to be re-checked to confirm that the problem is still there, and if it is (which he suspects) he wants to address it with IV therapy (iron infusion).  It will take 2 treatments, one week apart.  Then once the treatments are done my ferritin/iron levels will be monitored over time to make sure it doesn't begin to drop again.  They won't have my lab results back until later this afternoon, and if it shows low ferritin again.. they'll make an appointment for the IV infusion.  Could be worse!  Some folks have to have an actual blood transfusion if it gets too bad!  Mine isn't that bad, thank goodness.

Pulmonary issues still to go.  Have to do the breathing test, which I'm assuming is because of the "Mild, scattered scarring" in my lungs.  Which I don't understand at all and try not to think about too much.  It's all still up in the air at the moment as to where my pulmonologist will take things.  We will see.  Just hoping the chronic cough I have is just the low iron.

Still in the wait-and-see phase.

Now... about those damn dreams again!.......

You found a what?

Well, yesterday's appt did NOT go the way I expected.  At all.  Not.  At.  All.

So I went for my follow-up appointment with my pulmonologist yesterday, mostly to discuss chest CT and sleep study results.  The minor part is that they found 'mild sleep apnea.'  Ok.  Then he went on to discuss the lung nodule...and something else they found on the CT.

Doctor F stated that the lung nodule was slightly larger, but it also is "Very strange looking."  He went on to explain that there is a "Tubule" attached to the nodule that the radiologist says "May" be due to an impacted/clogged something-or-other-that-I-can't-rember due to my inability to sleep work a f*ck!  Sorry for the potty mouth, but it's true.  Anyway, the nodule is odd and he said he has to "Think about it a bit..." and may possibly do another CT scan, only with contrast this time.  He's not sure, because he doesn't know what to make of the findings.

Then he said there is another nodule... 1.9 x .5 cm... in my breast.  Well K den.

Next week I have to have another mammogram, and they're insisting they MUST have the last one that I had first, the imaging.  I'm a little spooked by this.  No one is telling me the characteristics of the nodule, and now I understand why the imaging center flat refused to give me a copy of the report... that was finished the day after my CT.  Normally.. I have no issues getting copies of lab or imaging reports.

I also have to see a hematologist (possibly) for the anemia, because the colonoscopy and EGD did NOT show any causes of the anemia.  I will start Rx iron pills today or tomorrow, though.  Hoping I can tolerate those.

Now the big, fat, giant wait.  Again.  Seriously?

I'm nervous about the mammogram, obviously, but the worst part is T's attitude.  He is just mostly put out because I wanted him to give me a ride there, to be with me while I have this screening.  He basically complained, meaning it was an inconvenience.  I simply told him, never mind... I will take myself!  I certainly don't need some whining, self-absorbed, watch-checking complainer coming with me on THE SCARIEST and most stressful test to-date.  Mr. Indifference needs to keep his distance, because what I need right now is far from whining, complaining, etc.

Yes.  It's time to be a little pissed about this.  And I am.

Dammit!!

So what of the heart, home, a place where my soul can feel uplifted, rejuvenated, allowed to grow and breathe and soar?  Dunno.  Still waiting on that one, I guess.  Dealing with the anemia is a start.  PC doc is referring me to a hematologist to see what the cause is.

Dammit again!

*sigh*

I did the most disgusting thing yesterday

As confessions go, I have to say that facing the radical diet changes I'm facing, I thought it was time to step out on that ledge and test the waters.  Now, I've been working on a vegetarian/vegan diet for a few months, which means strictly no meat (easy for me) and trying to avoid dairy at all costs.  The latter has been difficult because they put milk, whey, etc. in just about everything, even potato chips.  WTH?  Not that I need to eat potato chips, because I definitely don't, but it's shocking how much dairy is in processed foods.  Now, the flip side to this is... I've become exceedingly sensitive to dairy, and trust me when I say it's best I spare you the details.  But even without the details let's just say that a plant-based diet is the right diet for me.  Now... having said that, let me add a big, fat 'however' to the mix.  Yeah.  We all get ourselves into trouble with the 'however,' issues.. don't we?

I've cut out dairy and meat, and I like that.  A lot.  It works for me.  However...I may have to add fish back into my diet due to the anemia I'm trying to resolve in hopes that it won't take MONTHS for it to resolve.  And for the record, I know and have been assured that the anemia is NOT from having a plant-based diet.  I understand the difference between heme (meat, etc.) and non-heme (beans, peas, lentils, kale and other green leafy veggies, raisins,  etc. etc.) iron and what I have to do to ensure proper absorption of that non-heme iron (vitamin C helps with absorption).  And it takes 2-4 years of a totally STRICT vegan/vegetarian diet for iron stores to become depleted.  By 'strict' I mean.. absolutely no meat, dairy, and no processed foods whatsoever.  Processed foods are often supplemented with iron (wheat, bread, pasta, etc.).  Most anemia is due to a health issue or bleeding.  We've no idea what's causing mine yet.

So, about that totally disgusting thing I did yesterday....

I ate a couple of bites of meat.  Ham, which I was opposed to eating even before I went to a plant-based diet.  It.  Was.  SO.  Disgusting!  It actually tasted like someone had given me pieces of salt-infused leather to eat!  Never again!

I have to try fish this week sometime.  I should have done it already, but I've been putting it off because, honestly, the idea just grosses me out like you wouldn't believe.  And back when I did eat meat, salmon was probably my favorite fish.  Over time, however, I got to where I didn't like it anymore.  Honestly, it isn't hard AT ALL for me to not eat meat.  I don't ever crave it, and it just tastes and feels wrong in my mouth.

So the meat experiment was an epic failure.  I'm okay with that.  More than okay.  I now have to see what happens when I try to eat salmon or other fish.  So exactly what's that about??....

Well, salmon is a source of heme iron, and one I may be able to tolerate until my doctor gets to the bottom of this whole anemia thing.  It's not safe to self-supplement with iron as it can cause great harm to your health if you're not getting the correct dose.  It's not something you want to mess with.  Foods with iron are a great way to keep anemia at bay IF your health is normal.  But you can't replenish your iron stores with food when you're anemic, and when you do get supplements from your doctor, and even if your anemia is so bad you require transfusions, it STILL takes a very long time to correct iron deficiency anemia.  Many say it takes about a year.

I've no idea yet how bad my anemia is.  My doctor just looked at my labs and said I'm anemic then set about to find out WHY.  The first usual suspect is hidden bleeding, and we've found no source yet.   The small intestine isn't accessible during EGD and requires the little pill camera to see what's going on in there.  Not sure we'll go that route, but it's a possibility.  Another issue that can cause it is bone marrow disorder.  Not sure we're going there either.  But something is certainly causing me to have anemia, and in the meantime.. I can begin taking in a little heme iron and making sure I supplement any non heme sources with a form of vitamin C.

.... I can tell you this, however... I am NOT going to experience the meat thing again.  Seriously.  Yuck!  Not sure I can even do fish, but.. we're certainly going to find out.