"It is health that is real wealth and not pieces of gold and silver."

"It is health that is real wealth and not pieces of gold and silver."

~Mohandas K Gandhi

Monday, February 14, 2011

And now for something completely different...

I felt a sore throat coming on yesterday afternoon and felt crummy last night.  Early to bed, two Tylenol PMs to help me sleep.  I woke up...still feeling like garbage.  I took some Advil and went to school, and made it through the day.  I am starting to feel crummy again.  I'm hoping that going to bed early again will help, but am not holding my breath.  Today is Monday; this Thursday will be three weeks since my last infusion.  This Thursday is also the day (night) that my husband and I are going to see Meatloaf, with the tickets I got him for Christmas. 

So, to sum up, I am following the pattern I have established this winter.  In a way, this is good- more evidence for Dr D (when I see him in two weeks) to use when I ask him to bump me up to every three weeks for my infusions.

However, the timing could have been slightly better...I will be quite pissed if I am too sick to enjoy the concert Thursday...

Saturday, February 12, 2011

Telling people

I posted my blog on Facebook for the first time yesterday.  I hadn't done this before because I wasn't sure how others in my life would react- with pity?  Annoyance, at me being all "look at me with my weird illness"?  Indifferent? 

Response so far has been overwhelmingly positive, so thanks to everyone for their support. 

This has been easier than it usually is telling people about my health woes in real life.  Reactions tend to fall into the following categories:

1. Shock: "But you don't look sick!"

2. Nodding: "Oh, it's like AIDS, right?  How did you get it?"  (Which, as I have said before, it's really not.)

3. Confusion: "But...there's got to be some kind of medicine to make you better." 

4. Awe: "You are so strong.  I could never do what you do."

All are well-meaning, and I do appreciate the concern.  But I sometimes wish I had something common and quantifiable.  If a person is deaf, people get that, and you can even show them an audiogram to prove it.  If a person has Down Syndrome, you can see the genetic malfunction.  If a person is blind, or has hemophilia...you get the idea.  My problems are so far outside the normal experience of pretty much everyone that, when I do choose to "come out" about my health, I end up getting into a much longer explanation than I'd like.  (I experience the same thing with my son's Sensory Processing Disorder.)  I am also no longer surprised by the number of medical doctors who have never heard of any of this, and whom I've had to explain it all to.  (I'll have to blog sometime about how, when I was in college and went to Health Services for a sinus infection, they insisted on getting a chest x-ray from me.  They then looked at it and freaked, because they thought I had tuberculosis.  Yeah, that was fun.)  I'm not someone who really enjoys being the center of attention in real life, so having to explain the whole thing is way more attention than I usually want. 

If I had to name the thing that bothers me most about having a Primary Immune Deficiency and Bronchiectasis, it is this: being different.  Being sick a lot does suck as much as it sounds, and coming thisclose to dying was no picnic, but I seldom am able to just blend in with a crowd, and be like everyone else. 

Wednesday, February 9, 2011

Feeling better (Needle Phobes Should NOT Read)

I love my IVIG.  Seriously.  The morning after my infusion, I woke up, bounced out of bed, and was able to breathe.  I had a mild headache, and a spectacular bruise on my left arm from the IV, but I felt much better than I had in about two weeks.

My nurse, J, used to be an oncology nurse.  This means, in her words, "I can get an IV in anyone."  See, people who are on chemotherapy have to get a LOT of needle sticks.  This means their veins get very scarred.  Have you ever noticed how scar tissue is tougher than regular skin?  The veins do the exact same thing.  To avoid too much scarring in one spot, we rotate spots each month, and arms, where I get my IV.  This most recent (overdue) infusion, J chose a spot near the back of my wrist on my left arm.  (You know, the hairy side of the arm.)  For the first time in a long time, I actually yelled out, "OW!!!!" as she stuck the needle in...and watched the area swell up.  The discoloration came later.  The vein blew, in a quite spectacular way, releasing a lot of blood into my arm, enough to make the area swell up and, eventually, bruise almost black. 

J pulled the needle out and studied the arm.  "Wow, I haven't seen your veins do this in a LONG time," she commented.

"What?" I bit out.  I am not good with needles, at all, and whenever I get stuck for whatever reason, I sit with my head turned as far away from the arm as I can manage.  J frequently has to remind me to breathe while she's actually sticking me, too.  (I've never yet passed out, but there's a first time for everything, I suppose.) 

As she does sometimes, she said, "Look, check this out."

"No," I said.  Just looking at a needle stuck in, well, anything, makes me a little queasy.  Once it's in, everything is taped, and I'm hooked up to the pump that releases the IVIG into my veins, I'm fine.  Getting it in?   Not so much.  "Just tell me what it's doing."

"Well, you're what, nine, ten days overdue?"  At my nod, she said, "You're sick, totally run-down.  Your veins are, honestly, a mess as a result.  I haven't seen your veins be that hard to stick, and blow that easily, since the first few times I infused you."  Which, I should add, was about a month after I was hospitalized for five days because of double pneumonia and a staph infection. 

Awesome.  Up yours, Big Insurance Company.  Because of you, I had to get stuck more than once that day, because my veins were in uch bad shape, because I was in such bad shape. 

Just about two weeks later, the bruise is just barely visible- kind of a faint yellow color.  I wonder sometimes, as I go around with an occasional bruise from the infusions, what people who have no idea what a medical mess I am think about these bruises.