Life is Challenging

First, I want to say I don't think the 'comments' are working which is quite frustrating. I can't reply to comments you post even as anonymous. I've monkeyed with the settings and everything seems to be fine so I am not sure how to fix this issue. If you don't mind, try leaving a comment and we'll see if it will post. I might switch my blog to another venue if this keeps up.

My dad's health situation has gotten a whole lot worse. He is in congestive heart failure. It's still almost two weeks until his appointment at the cardiac centre so last week we ended up back in emergency for an entire day just to get help with a medication change. It's so hard to watch him suffer like this. I'm over there more than I have been since he moved (thank goodness it's only a few blocks away).

My own health (surprise surprise) isn't great. Although to be fair I'm writing this while crashed having gone to my friend's/roommate's concert last night. I was having an energy moment and just thought - I'm doing it. Since finishing my contract last week I've barely done a single fun time-off type of thing between my dad's medical and mine.

I had another iron infusion last week (my 3rd of 6) and for some reason the IV caused me a lot of pain this time. I even had to have them end the session early. I didn't want to get a reputation as pain sensitive or a complainer but it was so painful! I managed to hold my tears back until I left the ward - burning pain all the way up my arm. My arm still hurts two days later (Dr. google has informed me it's peripheral phlebitis) but it's almost better thank goodness.

I am so sick of being sick. And I am not being careful. As soon as I get a good moment I go out and spend my spoons. I also push through ALL THE TIME to do things with my dad including helping him with daily care. What I'd really like is a vacation.

New Specialist

I have a new specialist, however, she is not an M.E. specialist. She is an internal medicine Dr. who specializes in haematology.

My white blood count, as those of you who follow this blog already know, tends to run low. Specifically, I get a low grade neutropenia fairly frequently. This is common in a number of autoimmune illnesses and with chronic viral infections. The new specialist also explained that this can happen after a severe viral infection (like hepatitis or mono).  I asked whether "even after 17 years" and she said yes.

She tested me for a bunch of the ones I've been tested for before (various anemias and autoimmune illnesses mostly). And while many doctors don't buy into the idea of a chronic Epstein Barr or mono infection she does think this is possibility in my case (that my body never fully fought it off). Either way, we both agreed that antivirals weren't a good option (partly because I've tried so many already with no real improvement and the side effects are pretty awful).

She is actually familiar with POTS!! which has never happened for me before outside the autonomic testing lab I went to Hamilton (and my M.E. specialist way back). Most doctors in this country (in my experience) seem pretty unfamiliar with it. Thankfully, she was not dismissive of the M.E. either.

She is testing me for a few more things (autoimmune, inflammation markers, and hepatitis) but given past experiences I don't see any of it coming back positive.

She also convinced me to try a treatment for my very low iron/ferritin stores.  I've had these for over a decade because I can't tolerate ANY version of oral iron without severe gastrointestinal distress, and I really mean severe. I am receiving iron infusions at the hospital once a week for the next 6 weeks.

I had my first one this week and while I didn't have too many side effects (thankfully) I am horribly horribly crashed. This, I think is from everything I've been doing as a result of my father's heart condition and fall, puppy, and to wrap up my course/teaching for the semester. I am feeling so ill today there are no words.

I think you need a photo of puppy.

Ripple with a raven feather

Back to Emerge.

Last spring my dad tripped and fell. We ended up at emergency however, thankfully, he did not break his hand.

This time he fell in his room (a fall rather than a trip) and scraped his face. There was some debate, but I decided to take him in just in case. It turns out he may have been dizzy due to A. Fib. When we got to the hospital his heart was all over the place. The emergency got busy throughout the day Sunday so it was hard to get anyone to tell us much at all. They just kept monitoring him.

For someone with a chronic illness and a father who couldn't manage alone (he freaked out when I left for 15 min), it was a trying couple days. They ended up moving him to a cardiac floor so I got home at midnight (then back the next morning).

He is now back home with some nursing coming in and the resident staff (PSW) checking on him. While not the main issue his face is now horribly bruised and swollen. We are now loaded with appointments in the next two weeks.

I don't seem to be able to catch a break lately. I have puppy who still needs a fair bit of focus (although it's getting easier and I love her a ton already), a pile of marking I need to do, and - oh right, my own appointments.

I'm seeing a specialist about my frequent low WBC (white blood count). Unfortunately if history serves I will be told I am a completely healthy woman as my bloods are otherwise normal (not sure why I'm going).

Wish me luck over the next couple weeks. I have a feeling my dad might become harder to care for but I'm trying to just get through each day with these emergencies that come up.