Saturday, October 16, 2010

Stick a fork in me

So, not really sure if I posted about this yet or not because my short term memory is S.H.O.T.  Why? I have no clue.  I thought at first it was fibro but this is insane. I think I am repeating myself multiple times so if I already blogged this, you may silently close the window now haha.

So I went to Kaiser Sunset last week (was it last week?) and saw an immune specialist.  Well SPECIFICALLY one who has a patient with CVID AND lung disease.  My mom went with me.

SIDE TRACK:  For those of you who are actually reading this.....the fact my mom took me was scary.  We have had a rocky relationship, well, always.  I love her but we have had to spend time apart because, well, no one gets me, especially my family.  Years of being called drama queen, hypochondriac, etc. So I have always taken care of myself with this illness.  Short stints of friends helping out during really BAD times!  So needless to say an entire army of people were praying for this trip!

Ok back on track before I completely forget what I was blogging about haha.  First off, my mom did really good and did NOT eat an entire bottle of Xanax on the way.  Can I get a WOOT WOOT for Onstar???

So we get there and the doc and he looks me over really good, I give him a complete history then he pushes away from  his computer and looks at us and says "you have a VERY serious lung disease and I need to send you to National Jewish Hospital in Colorado".                                            <------- that is the silence that followed his statement.  I look at mom and her mouth is wide open, moving like a goldfish who is gasping out of the water.  I said "Well God Mom (I might have called her Judy) I'm not going to die" then look back at the doc and said "am I"?  He said no but repeated how serious this is.  My mom finally got out the words "I have always rolled my eyes at her, I thought she was a drama queen".  Wait! Whaaaaa??? Did she just say that outloud?????? I almost cried.  It was worse than that but I'll take any kind of acknowledgement honestly.

So we drive home just sort of going back and forth over what to do, who will go, she doesn't want me to work (because she specifically asked and he said no - hehe I'll show 'em) and at the end, we were still lost.

I've been back at work for 2 weeks now.  Hard, doesn't even begin to explain.  The fatigue is something I never have experienced.  Ok ok I know I may have said that when they dx me with Valley Fever but this time I'm serious damit!  Ok I'm done whining.  My mom calls me the day after and tells me my sister is putting $100 on my child's lunches so I can stop feeling like the worst mom in the world about feeding my child cereal every night.  Huge, monumental.  I email sis and thank her, ask if mom is OK, she said "well she feels really bad for not believing how sick you really were". WTF? Ok someone is pretending to be my mom right lol.  I said, and I meant it, well I'm not mad, as long as she believes me now, thats all that matters.  Then my mom tells me she will come help me around the house once a week so I can cook and freeze food and get some rest because I insist on working.

Fast forward to last Wednesday.  I see my local lung doc who is now freaking out and wants to do an open lung biopsy STAT!  I say no way, I was told no more till I get to Colorado.  He said ok.  THEN I start asking questions.  What the hell is it called?  GLILD - Granulomatous (confirmed) Lymphocitic (unconfirmed, makes it really bad) Interstitial Lung Disease.  Check.  Will it kill me? We don't know, I suppose it could.  We (docs) just don't know that much about it Kelli.  Ok, half a check. What can happen to me?  You can end up on oxygen.  What the he??  Wow.  TMI,  I guess it is pretty bad.  I'll keep ya'll updated, I promise, one way or another ;)

Sunday, October 10, 2010

CVID & Subcutaneous Immune Globulin (SubQ)

First of all let me address how BRAVE I am for showing off my jelly rolls haha.  All in the name of science hehe.  Well well. For those of you who are new, I have an immune disease called CVID, Common Variable Immunodeficiency.  For the last two years I have been getting IVIG - Intravenous Immune Globulin.  This stuff is rough.  The first product I was on, Flebogamma, was horrid!  Horrible pain, migraines and more after my infusion.  Needless to say I would have to pack breakfast AND lunch because I was there at least 6 hours.  We had just about got it down to a science on IV day:  Pack lots of food, take a pillow, warm socks, laptop and earphones so I can watch Netflix.  I had finally gotten on a product that produced NO side effects.  Amazing.  Then BAM a new doc puts me on subq.  Its not so bad, takes up a couple of hours of my time once per week.  The pump has this nifty little pouch you can carry it around in.  I actually went to Kohls on my second infusion carrying it around with me.  It should help keep my IgG levels more steady and consistent.  No more 4th week troughs for me NO-SIR.

It is quite the adjustment honestly.  Its not so much the needles that is hard.  It is all that PREPPING! My gawd! I am so freaking paranoid after watching the videos and working with the nurse 2 times I am almost positive I am going to get some horrid flesh eating bacteria in me from improper cleansing.

Ok sorry, crazy rant haha (sort of true though).  The nurse then sends you home with your supplies:  a big RED sharps container and a big box for all your needles, syringes, tape and clampy connector things.  I have no idea what they are called frankly.  Also a flip chart of the "best" places to poke yourself.  It could just be me, but I cannot reach my own tush if you paid me a million dollars.  I'm sure there is an "inch to pinch" but I can't reach it.  If I was 20? Maybe.  My seven year old would be happy to stick mama in the butt with a needle but I didn't offer.

First thing I did wrong when I was on my own?  Forget to let it come to room temperature.  LAME.  So that put me back an hour.  No biggie.  EXCEPT I forgot by then my Emla cream had worn off.  It's this nifty numbing cream you put on to help the bite of the pokes not feel so.....pokey.

Secondly, my child, had to TOUCH everything.  No, not just point and ask what it was, she needed to POKE it.  This produced a screech from me and then the wasting of many more packets of alcohol wipes.

All in all, I must say, it is not that bad.  I have a rash now, but maybe that can be attributed to the cream? It's my 3rd subq and first rash and first time with the cream.  So I'm going to blame that instead of worrying about it.

I think the funnest part is my daughter trying to film me with my crappy cell phone (God, please give me an android phone, I really really really need one, really) (Oh and did I say I really NEED one?).  I was going to attach but it is NOT being cooperative.  Stage fright possibly? I will also attach a picture for those of you who need a visual :)  Until next time....ta ta!