Headaches

I went to see Dr. D, the one who oversees my IVIG, the other day about my infusion headaches. They've been pretty bad- I've had to take several days off school this year because of them.  Basically, infusion headaches occur because of the same reason as organ rejection happens when you get a transplanted organ- the IVIG is not my "stuff", so my body is trying to reject it.  It's not uncommon for IVIG patients to get infusion headaches, and it apparently is also not uncommon for a patient to have one regmen to keep them away work for a while and then stop workng.

This is what's happened to me right now.  The meds I was using for a couple of years to keep headaches away are not working for me anymore.  Instead of taking an oral steroid before my infusion each month, now J, my nurse, has to give me 10mls of an IV steroid before my infusion starts. 

I freaking hate steroids.  I mean, they're awesome, because they help a variety of woes.  There are a lot of winters I'd never make it through without Prednisone helping me to breathe.  But I hate the way they make me feel.  I get overheated too easily, and my cheeks are flushed for up to a good 24 hours after I'm done with them.  I have  wake up and pee at night more often, sometimes two or three times a night.  And I just feel weird.  I can't explain it. 

The IV from the other day made me way overheated.  That was Tuesday, and it's now Thursday, and I'm jut now starting to cool off.  My dermatologist yesterday (I go once yearly for a full-body check- with pale, pale skin like mine, one can never be too cautious, I think.) even commented on my rosy cheeks.  "Having a rosacea flare-up?" he asked.  No, I told him, and explained. 

Anyway, I am now 48 hours post infusion, and so far, no headache, so it looks like the IV steroid is going to work for now.  I wonder how long this will last.

Role Reversal

My husband is sick.  It could just be a bad cold, maybe a mild flu, neither one of us is sure.  But he stayed home from work today because he felt so lousy, and he simply does not do that.  I can't remember the last time he called in sick, actually.  If I didn't love him so much, his healthiness would be seriously annoying. ;) 

Anyway, when he's sick, he just wants to be left alone.  Don't try to talk to him or feed him, just leave him alone.  So, when he came home from work early last night and came upstairs right away and curled up in bed, my son and I did just that.  By 8pm, I was the only one awake in the house, unless you count the cats.  It was kind of a surreal feeling.  I'm not used to being the healthy one taking care of everything!

The other interesting point from today was when he and I chatted briefly when I got home.  He's still not feeling great this evening.  He commented something about how he's "not good at pushing through illness" and I seem to, no matter how lousy I feel, be able to at least do a few things.  I kind of shrugged and said the first thing that popped into my head: "Well...I kind of have to be."  I guess, when one is sick a lot, one gets used to it to a certain degree, and learns how to push through certain aspects of it.  He looked kind of awed that I can keep upright when I feel really bad.  But, really, if I couldn't do that, to a certain degree, I'd be an invalid for six months out of each year. 

On the mend

The cough is breaking up, finally.  I can sleep without having to resort to Tylenol PM.  (Well, I should clarify that: I can sleep as much as I usually sleep- I have bad insomnia, and have for years.)  Daylight Savings Time began here this weekend, so even though it's after 11pm, my body thinks it's only after ten pm, and I am therefore not tired.  Ugh.  I'm pretty sure the prednisone is not helping this situation, either- it usually does cause sleep problems for me. 

My son's cough is starting to break up, too.  We don't need to give him albuterol every three to four hours anymore.  He is still coughing in his sleep, but it doesn't seem to be waking him.  It's hard to tell sometimes, though- he talks in his sleep on a regular basis.  I heard him talking before, and I thought I even heard him call my name, but when I stood at his bedroom door and listened, I heard him babbling some kind of gibberish.  Gibberish is a good indication he's still asleep.  I can't wait for when he's a teenager, to hear what kinds of things he talks about. 

It's been warm enough this weekend to have windows open.  It feels good to have the breeze blowing through, like spring is really on the way.  All the snow is gone from our property, too.  And I noticed today- my hyacinths are starting to come up!  It seems I have survived another long winter.

Dr D is awesome.

So, last week I had my appointment with Dr D.  I brought my datebook with me.  I keep a log of sick days, IVIG dates, and antibiotic usage in there.  When he came in and asked me how I was doing, I greeted him with, "This winter has SUCKED!!!"  He chuckled and asked what I meant, so I opened the date book to September and began giving the summary: "Okay, IVIG here, three weeks later, sick enough to go on an antibiotic- Avelox-  Three weeks later, IVIG, day after treatment, needed to start on an antibiotic..." 

The pattern that emerged was that a week to ten days after finishing an antibiotic, I was sick enough to need a new one.  Dr D agrees with my thought- namely, I've been colonized by Some Kinda Bug, and was never on the right antibiotic or on long enough to kill it.  So he put me on Suprax, one I'd never heard of before, for 28 days.  It's an older drug, he said, that, "...went away for a while and is now starting to come back."  I have to call him in mid-April to report in.   Oh, and I'm to "...eat a lot of yogurt this month."  That part is no big deal- I usually eat a good amount of yogurt, anyway. 

So, now it's a week later.  Most of the crud has gone from me, except for a Godawful cough, worse than usual.  It's nonproductive and very wheezey.  I've been using my rescue inhaler every four hours around the clock, including at night.  Today I had to bring my son to the doctor (I think he and I ended up with the same bug), so I called Dr D's office to find out if he'd be willing to call in a scrip for prednisone to my local pharmacy, since I was just there last week.  The receptionist took down all the info, and called me back two hours later- no problem, it's already been called in.  Yay!  I love Dr D.  He's a great guy- he understands that I totally know what's going on in my body, and is willing to take my word about what I need right now.  Most doctors are not like that- most doctors would have insisted on me schleping in for another office visit.

Right now, my son and I are basically in the same boat- wiped out, even upon getting up in the morning, from this cough keeping us up much of the night.  (My poor husband looks a little frazzled, but is trying desparately to keep up a positive front.)  According to the pediatrician, the kid just has that respiratory crud that's going around like wildfire, and his lungs don't actually sound that bad to her, and the cough is improving slightly with each day, so continue to give him albuterol every four hours, or three if need be for the next couple of days, and give him a dose of Benadryl so he'll actually sleep tonight.  The last seems to actually be working- I put him to bed 40 minutes ago, and haven't heard a peep from him for at least 20 minutes.  Tonight, for the first time in days, when I gave him albuterol, the cough actually seemed to be loosening up a bit, too. 

I sure hope we both get the rest we need this weekend and are back in fighting shape by Monday.  I've used ten and a half sick days this school year, and it's only early March!! 

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...

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. 

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.